celiac

A heuristic approach to deciding what is safe to eat with celiac disease

by Dana Lewis

When you’re diagnosed with celiac disease, it is nice in the sense that you have a known issue (consuming gluten causes an autoimmune reaction and damage to your body) and that the solution is known: eating 100% gluten free. The challenge, though, is that “being gluten free” is not easy. Every food, every drink, every morsel – and even some non-food items – can risk cross-contamination, even if something itself is gluten free. There are countless decisions a day about what is safe to eat. And what many people don’t realize (and may find confusing from the outside) is that this decision process can change, over time or even on a day to day or situational basis.

I had been thinking about writing a post about my approach to celiac and how I decide what is safe for me to eat (and why), and how that may differ from another person’s perspective. Even person to person with celiac, we may make different decisions! But more importantly, I myself may make different decisions on different days for the same food or situation. (Plus, people who are gluten free for non-celiac reasons may have their own, differing decision making process about gluten.) There was also recently a really interesting scientific study published that I think can help illustrate why decisions vary at different points in time for the same person, so I wanted to talk about the high level approach and then what this study shows us about why this type of approach is helpful for people with celiac. I have had celiac for 18+ years, so I have a lot of experience evaluating food options, food labels, and deciding what to do. I rarely get glutened – maybe once a year, if that – and this is even with eating out and getting takeout from a lot of restaurants. I am also very symptomatic (even tiny amounts of gluten are noticeable to me), thus I have some confidence in categorizing myself as someone who does not get glutened often.  Disclaimer is probably needed though: I’m not a medical professional and I’m not telling you what to do. Instead, I’m trying to show you how I think and evaluate things:

  1. Eating certified gluten-free is best, but not always possible

It’s helpful to realize that there are certifications for gluten free. In the US (where I live), there are a couple of different labels to understand the difference for. A food labeled “gluten free” means it has been tested to the FDA standards of <20ppm. However, that doesn’t mean it’s certified. There are several GF certifications beyond this standard, most of which are to the standard of <10ppm, and usually brands that bother to get certified also have good processes for vetting ingredients (inputs) as well as batches (outputs) of products. Different certifications have different requirements for these things so they slightly vary, but usually it means a higher standard – meaning a lower amount of gluten tolerance – than a standard word of “GF” on the label.

That being said, it’s a lot better than NO indication of gluten free on a label!

My rough hierarchy is:

  1. Certified gluten free (usually <10ppm)
  2. Gluten free (FDA standards, so <20ppm)
  3. No indication of ‘gluten free’, but no gluten-containing ingredients and no cross contamination warning such as “made on shared equipment”. This means it could be <20ppm or could be above, we don’t know.
  4. No indication of ‘gluten free’ and a yellow flag – some cross contamination risk such as “made on shared equipment”; or a red flag “may contain wheat”. Again, we don’t know if it’s <20ppm or above.
  5. Red flag, will not eat for any reason – contains wheat or a gluten-containing ingredient (such as malt or malt flavoring, rye, barley, etc.)

There are a lot of foods that I eat that fall into that third category though – say, picking up a banana from the produce section at the grocery store. It isn’t labeled as gluten free – is it safe to eat? I say yes and choose to eat it, even though it’s not labeled, because it doesn’t make sense to have a gluten free label on a banana when it’s a self-contained item and not processed with other foods that are likely to contain gluten.

Same for more processed items, such as other fruits and vegetables, or a container of pre-washed and pre-cut fruits or vegetables, or even a bag of frozen vegetables. As long as it doesn’t have a “may contain wheat” warning on it, I am more likely to be ok consuming it if it doesn’t have gluten-containing ingredients.

But there are other foods that ARE an issue in this category, which I have learned from experience of reading a lot of food labels. Trail mix, processed fruit (like yogurt-covered and other dried fruit products), etc because they are often mixed on shared production lines with trail mix items that do contain wheat. For these, I am more likely to be cautious and avoid items that use shared equipment because it feels like the risk of cross contamination across product lines or batches is higher. (It’s a bummer, because it rules out a lot of dried fruit, trail mixes and snack mixes, nuts, etc. that otherwise should be gluten free, but for me the uncertainty is too high). Oat related products, which I’ll talk about more below, also fall into this category.

Generally, though, some brands or sellers of products aren’t incentivized to test and label their products GF, even if they ARE gf (bananas and other single-item fruits and veggies are a great example). But, given they themselves have no gluten ingredients and are minimally processed, they’re usually a reasonable choice (e.g. a banana). GF testing costs a lot of money, which is why brands may not do it, and why we as people with celiac have to decide how to deal with the fact that there are a lot of foods in this category that may be safe to eat. Ruling them out because they don’t meet the costly most stringent standards would drastically limit our options and mess with quality of life. If you’re newly diagnosed and trying to recover from months or years of immune system damage, it may make sense to be more strict at first, and then expand back out (or not). But know that some of us with celiac ARE choosing to eat foods that are not definitely labeled gluten free (such as a banana), and that does not necessarily mean we are getting glutened.

2. The amount of food matters

Because I am someone who gets symptoms from tiny amounts of gluten and know how much gluten hurts me, I have a clear red line: I don’t eat gluten. I will not knowingly eat “may contain wheat” products: for me, it’s not worth it, even if the risk of a single bite is low.

One example is a few months ago, when I was online grocery shopping and found a new product, a chocolate-covered frozen strawberry that was new to me. It didn’t list gluten ingredients on the label, but they didn’t have any cross contamination warnings in the product listing, on the picture of the item online, nor anything on the manufacturer’s website. So I bought it. When it arrived, I went to try some, and glanced at the back of the bag and saw a ‘may contain wheat’ warning. ARGH. I was so mad: I had actually cross-checked the manufacturer’s website before I bought it, in case the listing was wrong! I was mad enough to email the brand and tell them they should be listing this on their product site, plus the grocery store listings (even though they don’t always have control over that). But they DO control their site and they should fix that. Super annoying. Anyway, the point is, I didn’t eat these and gave them to my husband, Scott, because they weren’t worth a possible glutening. I could’ve tried one just to taste it, but it wasn’t worth that possible risk. Sloppy labeling and communication about labeling like that makes me not trust a brand.

But, as above, there are times when there are products with NO label / cross contamination warning…and I do try it. However, I recognize the risk could be higher in this product versus the example above (chocolate covered strawberries that may contain wheat) – and there’s no way to tell. The difference, though, often also has to do with whether the risk is known/not and the quantity. If I decided to try the chocolate covered strawberries, I’d likely mentally categorize them as safe and something I would keep eating, so I would consume more quantity of them, driving up the risk. Whereas if I “noped” them and put them in Scott’s gluten section of the freezer, I wouldn’t be at risk of mindlessly eating them at a later time in larger quantities, increasing the risk. For foods that are not labeled and don’t have a cross contamination warning, I usually am cautious about the quantity, because as the quantity consumed increases, the risk of consuming gluten also goes up.

And this is where that new scientific study comes in. They did a gluten challenge test via pills with celiac volunteers in Australia (shout out to these brave folks who participated in the study), and recorded symptoms *and* did a test for a proxy of immune activity to test response to multiple levels of gluten, from <1mg to 2mg, 3mg, and much higher doses. (It was randomized, blinded, and they also used a placebo for control!) And what they found was that doses <=2mg didn’t trigger an immune response…but 3mg did (in a sizable minority of participants). (Not necessarily symptoms though, even in those with an immune response). Note a HUGE caveat of this study is that immune response does not mean proven damage, but it does give us a threshold to understand at what point the body might start reacting and how to think about cumulative exposure over the course of day…for which we previously didn’t have the data to have a mental framework.

Thinking about 3mg is super duper helpful because we can now use that in context of the thresholds we are most familiar with: <10ppm (certified GF usually) and <20ppm (FDA standard for GF). If you eat 30g (a small snack) of a food that is <10ppm (parts per million, so < 10/1,000,000th of it is gluten), you get a possible 0.3mg gluten dose – which you wouldn’t expect an immune reaction to. Same for doubling that, a larger snack – that would be 0.6mg. But if you 10x that (think meal-size amount), that puts you at 3mg. Whoa. That’s the level of an immune response (possibly), if gluten was present at that top end (10ppm) for that product. Now, does that mean symptoms and damage long-term? Maybe not – but this starts to show us how the amount of food matters IN ADDITION to the labeling.

The FDA standard, <20ppm, shows this even more. A 30g food amount at the top end of the 20ppm standard would be a 0.6mg dose; a larger 60g snack would be 1.2mg…whereas a 10x meal size amount (eg 300g) would be 6mg, which is definitely in the category where the immune system is more likely to respond (according to that study).

Now imagine a food in my third category, unknown ppm. That means it could be even below certified standard (eg <10) or FDA standard (<20ppm), but it could also be more – we just don’t know. But in any case, use the same logic: 30g of 40ppm (double the FDA standard, for easy math) would mean 1.2mg. Maybe fine. But as the amount of food increases, you’ll see that possible gluten amount increase: 60g of food at 40ppm would be 2.4mg, and well before you get to a meal size (300g), you would go well beyond the point of gluten exposure (>=3mg) where more people experienced an immune response and – as the amount got bigger – also increasingly saw symptoms.

This is how I think about the label/not uncertainty and the amount of uncertainty, now: in context of the quantity I might want to eat. I had previously intuited “this is more risky” when the label was uncertain and the food quantity was bigger, but this helps me put a numerical framework on the risk. 

Some loose categories to think about now with this framework:

  • For naturally GF / simple or few-ingredient foods, like fruit, vegetables, plain rice, potatoes, beans, plain dairy, or rice pasta, “no gluten ingredients” may be enough for many routine decisions, especially if the product is simple and not from a high-risk category and does not have any cross-contamination label warnings.
  • For complex processed foods, “no gluten ingredients” is weaker. A 30 g snack may still be a reasonable pragmatic choice for some people, but a 300 g meal is a different decision.
  • For oat-containing foods, “no gluten ingredients” without GF labeling or process information is a much weaker signal. Oats deserve their own caution category because of cross-contact risk in the supply chain.

3. Oats are evil* 

* Evil in the sense that they require their own mental category of gymnastics and special handling, above and beyond what we have discussed. Some people with celiac perceive that they are sensitive to oats themselves, but not everyone is – and I am not. I do eat oats, see below. But, oats are OFTEN cross-contaminated at harvesting, processing, etc because of the nature of being grown in fields near gluten-containing grains, and thus anything with oats is a hot mental mess of risk. (They’re not really evil, they just require a lot of thought, see below). 

Oats are themselves gluten-free, but they have higher cross-contact risk from growing, transport, processing, and manufacturing. Whole or rolled oats prominent in the ingredient list should bump risk assessment up; a controlled gluten-free oat process with certification, purity protocol, dedicated facility, and batch testing should bump risk assessment down.

But sadly, some of this is really hard to figure out. It used to be that there were “purity protocol” oats, where oats were grown in fields far away from gluten, harvested separately, processed separately, transported separately, etc. And with more testing on arrival, etc. But this was very expensive, and it’s rare now. And…that process was still not flawless; sometimes cross contamination of oats still happened. (The site “Gluten Free Watchdog”, for example, which does lab testing on consumer GF products used to recommend certain brands of purity protocol oats, and as of 2026, no longer does so.)

So what is a person with celiac supposed to do? Avoid all oats?

You could, but you don’t have to. You could avoid oat-related products for any of the following reasons:

  1. Oats bother you for other reasons
  2. You are too tired to go check the brand and their product testing protocols for a particular product
  3. There’s no indication of testing for GF or special handling consideration even though it uses oats

You could also decide to consume oat-containing products for any of the following reasons:

  1. The product is certified gluten free, which means there are requirements around testing the ingredients and the batched products, which reduces the risk
  2. The product is one where oat is used for oat flour (meaning anything is ground up and distributed across the flour and then across products, so the risk of one bar/cookie/etc itself is lower than a whole oat product), lowering the risk of a particular bite having >3g of gluten on its own
  3. The product is not certified gluten free but the brand has publicly shared their process for testing batches of products and preferably how they test the oats themselves before using them inside products.
  4. YOLO and you want to eat whatever the product is anyway, regardless of the above

What do I do? It depends.

Sometimes, depending on the situation, I fall into scenario A (avoid) based on reason number 2: I am too darn tired to go research the provenance and figure out if 3 applies. It’s safer to avoid as a rule, and eat something else (or not eat, and eat later something safe).

Other times I will do the research and if it falls into reasons 1-3 of scenario B, I will choose to consume it.

Here are some practical examples, which ended up glutening me, and what I changed as a result, and some maybe surprising categories of things that I *do* eat as a person with celiac:

A. Remember Nature Valley Oat & Honey bars? I looooved those as a kid. So when KIND came out with oat&honey bars that were marked gluten free, I was excited. I avoided them for a while, but I heard other people with celiac were eating them, and I decided to try them. I did ok, but I did eat one once (when I didn’t have a lot of food options while traveling), and BOOM I was glutened. It was definitively that which glutened me and it was brutal. Those went back on the NOPE list for me, along with all other KIND products containing oats. Yes, they are marked ‘gluten free’ which means that they batch tested at FDA standard (<20ppm), but cross contamination can still happen, and it was such an extreme level that I permanently decided this was not a risk worth taking for me. (The exception might be if I was stranded on a desert island and that was the only food item; but even when very very hungry on a travel day I will choose staying hungry over trying one of those again, or anything else that is a similar whole-oat type product rather than something where the oat has been processed and spread as a flour. The latter reduces the risk more than whole-oat products)

B. Speaking of Nature Valley brand, recently I noticed a product listing for new chewy protein bars that were supposedly gluten free. I assumed the listing was wrong, because in my brain ‘nature valley’ is strongly associated with gluten. But, I double checked, and it’s actually certified gluten free. More importantly, I looked at the ingredients – these are specifically the chewy nut protein bars, and there are no oats, they are nut (and soy protein) and chocolate based). Ok. So I can apply my rubric – not the oat one – and because they’re certified gluten free, try them. I did (and actually like them), so these have entered my ‘snack bar’ rotation as a reasonable option. I wouldn’t eat a lot of them in one day – because the risk grows with quantity, but because they are certified gluten free, that is good enough for me at single-serving quantity. And so far, I have not gotten glutened from these.

C. But what about other oat-containing products? Because of my past experiences, I am VERY skeptical. A cousin-in-law shared a new product she thought I might like that she had gotten for her toddler, because it was marked GF. It was an oat-based PBJ-stuffed oat bar. I scoffed and dismissed it, because in the past I had checked out this brand and they didn’t say anything about GF processes and testing, so I let my oat rubric (NOPE) override the choice. However, when I had more energy (and was bored), I went and looked them up online. Nowadays, this brand DOES list their processes very clearly. They say they are GFCO-certified gluten-free, its oats are certified gluten-free, its bakery is a gluten-free facility, and it does daily testing on every batch of oat products. Ok, now we are talking! (They also talk about purity protocol oats, which as I said, is a great detail but does not make it infallible). But because they used gf-tested oats before they even start cooking AND do daily testing of batches, that means there is a greater chance of catching issues. This is important because one bar is a 60g serving, which is double a serving of my previous example…but it’s the certified (<10ppm) standard, so that means 60g of snack, even if it was 10ppm, means a likely 0.6mg of gluten exposure risk. That’s still well below the ~3mg immune response threshold, so that makes me more comfortable with the risk of this product. Plus, like I said, the in/out testing. Would I eat 5 of these in a day (300g of it)? No, the risk definitely goes up with more. But, I not only eat these, I eat these on a periodic basis (a few times a week), because of the testing and certification. Even though they are oat-based.

(What is this product/brand? Bobo’s PB&J rounds. I haven’t tried many other Bobo’s products but the above detail is supposed to apply to their other products, too – check their website and on-product labeling for the latest details in case this has changed.)

D. Another example might be Honey Nut Cheerios or Lucky Charms, which are now all GF by default. But they’re made with oat flour. General Mills has pretty good testing processes for batches, but they also had some kerfluffles when these products were first marketed as GF with feedback from the community that it was causing issues. Now that I have the above scientific study to help frame QUANTITY with risk, it makes me wonder if it was the quantity that was causing the issues, because cereal is hard to do a single-serving of, and as I’ve shown in the data above, as you eat more of something the risk goes up, EVEN IF IT IS CERTIFIED GF. A large bowl (or two) of cereal would be more likely to get increasing exposure, even if the per-serving amount was under the FDA standard or certification threshold of acceptable ppm. I personally also have a hard time limiting my quantities of cereal, so based on this I don’t eat oat-based cereal like this…but recently I decided I could get single-serving cups of Lucky Charms occasionally, because it’s a fixed quantity (30g); labeled as GF; and it’s an oat flour product rather than whole-oats. Plus General Mills has made it clear they test after sifting their oats; after the oats become flour; ship oat flour separately; then they also do batch testing at the end. (Same for other General Mills GF oat flour products). Like Bobo’s, that’s as decent of a process that I think we can probably get. So, like Bobo’s, I am now willing to eat these products. But, again, for cereal, only as a single-snack-serving product, because of the risk quantity calculation and my own experience with resisting the temptation of a larger bowl of cereal.

E. I even eat oatmeal. Quaker Oats, like General Mills, has a process where they evaluate oats in a separate facility for gluten as well as evaluate their batches of finished products. Note that this does not mean the general Quaker Oats products: they only have a few GF products. One is a big can of quick oats (like you might use in recipes for say, oatmeal chocolate chip cookies), and another is prepared packets that you mix with water or milk to make a bowl of oatmeal. These GF versions with prepared packets come in plain or maple & brown sugar flavors, and I eat the latter periodically and have never gotten glutened from these. Like the cereal, I make this decision based on the brand’s processes and testing of input ingredients as well as batch testing the products, plus the awareness that there is still a risk but that I am further mitigating this risk by consuming single-serving quantities of it.

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All of the above is a lot of words but this chart may help, with colors to show how as you go down the levels of labeling certainty, the type of product (the three columns: simple; complex processed; oat containing) also should factor in, AND so should the quantity because the risk goes up the more you eat something.

Example chart showing the 5 row categories from certified GF to 'may contain wheat', plus columns for simple food that is naturally gf to more complex processed food, to an oat column broken into two categories for oats with good testing processes and those without that info. As you go up in row category, or to the right toward complex food or oat-containing foods, the amount of food consumed increasing also drives up risk. The chart shows ok-ish decisions versus those that start to transition to caution or to outright avoidance categories.

It’s absolutely ok to make different decisions at different points in time, based on the situation. If you are struggling with recovering after diagnosis, you may want or need to be more careful and limited in what you eat. If you have been getting glutened and can’t figure out where, this may help you think through types of food or quantities where the risk may be in the quantity. (P.S. – people with celiac can also have exocrine pancreatic insufficiency (known as EPI or PEI), so be aware if you have eliminated all sources of gluten and still have GI symptoms, you may want to take the EPI/PEI-SS and ask your gastroenterologist and discuss elastase testing to rule out EPI).

And sometimes you’re just too tired to think through the risk and just stick with the safest possible option – meaning only choosing the things labeled definitively GF. That’s fine, too. You can also choose differently when you have more energy to do research and find out if you should rule something permanently out or rule it back in if the brand has changed their labeling / processes /etc.

Personally, if I’m put on the spot (meaning someone offers me food or shows me a label and asks me if I want any), if there is any uncertainty I’m prone to saying no thanks, it’s not worth it (right then). Sometimes I’ll go back later when I’m not on the spot and look it up and look for more information about testing/etc from the brand. That’s how I ended up adding the PB&J rounds into my snack rotation, after first excluding them because they failed my oat rubric test based on the on-product label.

Another big caveat is to remember to check products often, even if it’s something you eat often. Brands could add more testing and validation to their products; they can also change their products and add new cross contamination warnings to their products that weren’t there before. Anything that is processed is definitely worth reading the label for: I have found that cheap store-brand bags of frozen vegetables usually have “may contain wheat” warnings on them (argh!) on the product itself, even though the online pictures of it and the label don’t show them online. So keep in mind online listing and online pictures and actual on-product labels can vary. (Name brand frozen veggies tend to not have this warning on them, so in that scenario I would pay more (sigh) for the name brand without the warning).

What do I eat as a person with celiac? And how do I decide what is safe to eat? A blog post by Dana M. Lewis on DIYPS.orgAnd again, I want to emphasize that you can make difference decisions for different situations. How I decide – and my rubric above – may not match how you handle things. Everyone is different. If you’ve been glutened lately and want to be more strict/careful in your decision-making, you can. If you are traveling and don’t want to risk feeling bad, you can be more stringent in your criteria for what you do/don’t risk. These are just a few examples of where I make varying decisions at any point in time.

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Disclaimer is probably worth repeating: I’m not a medical professional, I’m just a person with celiac for 18+ years, I am not telling you what to do, but this reflects how I handle uncertainty and decision making and how/why it changes over time, especially as someone who eats a lot of packaged and prepared foods.

Running a Multi-Day Ultramarathon (Aiming for 200 Miles)

by Dana Lewis

I used to make a lot of statements about things I thought I couldn’t do. I thought I couldn’t run overnight, so I couldn’t attempt to run 100 miles. I could never run 200 mile races the way other people did. Etc. Yet last year I found myself training for and attempting 100 miles (I chose to stop at 82, but successfully ran overnight and for 25 hours) and this year I found myself working through the excessive mental logistics and puzzle of determining that I could train for and attempt to run 200 miles, or as many miles as I could across 3-4 days.

Like my 100 mile attempt, I found some useful blog recaps and race reports of people’s official races they did for 200-ish mile races. However, like the 100 attempts, I found myself wanting more information for the mental training and logistical preparation people put into it. While my 200 mile training and prep anchored heavily on what I did before, this post describes more detail on how my training, prep, and ‘race’ experience for a multi-day or 200 mile ultra attempt.

DIY-ing a 200

For context, I have a previous post describing the myriad reasons of why I often choose to run DIY ultras, meaning I’m not signing up for an official race. Most of those reasons hold true for why I chose to DIY my 200. Like my 100 (82) miles, I mapped a route that was based on my home paved trail that takes me out and around the trails I’m familiar with. It has its downsides, but also the upsides: really good trail bathrooms and I feel safe running them. Plus, it’s easy and convenient for my husband to crew me. Since I expected this adventure to take 3-4 days (more on that below), that’s a heavy ask of my husband’s time and energy, so sticking with the easy routes that work for him is optimal, too. So while I also sought to run 200 miles just like any other 200-mile ultra runner, my course happens to have minimal elevation. Not all 200 mile ultramarathon races have a ton of elevation – some like the Cowboy 200 are pretty flat – so my experience is closer to that than the experience of those running mountain based ultras with 30,000 feet (or more) of elevation gain. And I’m ok with that!

Sleep

One of the puzzles I had to figure out to decide I could even attempt a 200 miler is sleep. With a 100 mile race, most people don’t sleep at all (nor did I) and we just run through the night. With 200 miles, that’s impossible, because it takes 3, 4, 5 days to finish and biologically you need sleep. Plus, I need more sleep than the average person. I’m a champion sleeper; I typically sleep much longer than everyone else; and I know I couldn’t function with an hour here or there like many people do at traditional races. So I actually designed my 200 mile ultra with this in mind: how could I cover 200 miles AND get sleep? Because I’m running to/from home, I have access to my kitchen, shower, and bed, so I decided that I would set up my run to run each day and come home and eat dinner, shower, and sleep each night for a short night in my bed.

I then decided that instead of winging it and running until I dropped before eating, showering, and sleeping, I would aim for running 50 miles each day. Then I’d come in, eat, shower, and sleep and get up the next morning and go again. 4 days, 3 nights, 50 miles each day: that would have me finishing around 87-90ish hours total (with the clock running from my initial start), including ~25 hours or more of total downtime between the eating/showering/sleeping/getting ready. That breakdown of 3.67 days is well within the typical finish times of many 200 mile ultras (yes, comparing to those with elevation gain), so it felt like it was both a stretch for me but also doable and in a sensible way that works for me and my needs. I mapped it all out in my spreadsheet, with the number of laps and my routes and pacing to finish 50 miles per day; the two times per day I would need my husband to come out and crew me at ‘aid station stops’ in between laps, and what time I would finish each night. I then factored in time to eat and shower and get ready for bed, sleep, and time to get up in the morning. Given the fact that I expected to run slower each day, the sleep windows go from 8 hours down to less than 6 hours by night 3. That being said, if I managed to sleep 5 hours per night and 15 hours total, that’s probably almost twice as much as most people get during traditional races!

Like sleep, I was also very cognizant of the fact that a 200 probably comes down to mental fortitude and will power to keep going; meticulous fueling; and excellent foot care. Plus reasonable training, of course.

Meticulous fueling

I have previously written about building and using a spreadsheet to track my fuel intake during ultras. This method works really well for me because after each training run I can see how much I consumed and any trends. I started to spot that as I got tired, I would tend to choose certain snacks that happened to be slightly lower calorie. Not by much, but the snack selections went from those that are 150-180 calories to 120-140 calories, in part because I perceived them to be both ‘smaller’ (less volume) and ‘easier to swallow’ when I was tired. Doubled up in the same hour, this meant that I started to have hours of 240 calories instead of more than 250. That doesn’t sound like much, but I need every calorie I can get.

I mapped out my estimated energy expenditure based on the 50 miles per day, and even consuming 250 calories per hour, I would end up with several thousand calories of deficit each day! I spent a lot of time testing food that I think I can eat for dinner on the 3 nights to ensure that I get a good 1000 calories or more in before going to bed, to help address and reduce the growing energy deficit. But I also ended up optimizing my race fuel, too. Because I ran so many long runs in training where I fueled every 30 minutes, and because I had been mapping out my snack list for each lap for 50 miles a day for 4 days, I’ve been aware for months that I would probably get food fatigue if I didn’t expand my fuel list. I worked really hard to test a bunch of new snacks and add them to the rotation. That really helped even in training, across all 12 laps (3 laps a day to get 50 miles, times 4 days), I carefully made sure I wouldn’t have too many repeats and get sick of one food or one group of things I planned to eat. I also recently realized that some of the smaller items (e.g. 120 calorie servings) could be increased. I’m already portioning out servings from a big bag into small baggies; in some cases adding one more pretzel or one more piece of candy (or more) would drive up the calories by 10-20 per serving. Those small tweaks I made to 5 of my ~18 possible snacks means that I added about 200 calories on top of what was already represented in those snacks. If I happen to choose those 5 snacks as part of my list for any one lap, that means I have a bonus 200 calories I’ve convinced myself to consume without it being a big deal, because it’s simply one more pretzel or one more piece of candy in the snack that I’m already use to consuming. (Again, because I’m DIYing my race and have specific needs relative to running with celiac, diabetes, and exocrine pancreatic insufficiency, for me, pre-planning my fuel and having it laid out in advance for every run, or in the race every single lap, is what works for me personally.)

Here’s a view of how I laid out my fuel. I had worked on a list of what I wanted for each lap, checking against repeats across the same day and making sure I wasn’t too heavily relying on any one snack throughout all the days. I then bagged up all snacks individually, then followed my list to lay them out by each lap and day accordingly. I also have a bag per day each for enzymes and electrolytes, which you’ll see on the left. Previously, I’ve done one bag per lap, but to reduce the number of things I’m pulling in and out of my vest each time, I decided I could do one big bag each per day (and that did end up working out well).

Two pictures side by side, with papers on the floor showing left to right laps 1-3 on the top and along the left side days 1-4, to create a grid to lay out my snacks. On the left picture, I have my enzymes, electrolytes per day and then a pile of snacks grouped for each lap. On the right, all the snacks and enzymes and electrolytes have been put into gallon bags, one for each lap.

Contingency planning

Like I did for my 100, I was (clearly) planning for as many possibilities as I could. I knew that during the run – and each evening after the run – I would have limited excess mental capacity for new ideas and brainstorming solutions when problems come up. The more I prepared for things that I knew were likely to happen – fatigue, sore body, blisters, chafing, dropping things, getting tired of eating, etc – the more likely that they would be small things and not big things that can contribute to ending a race attempt. This includes learning from my past 100 attempt and how I dealt with the rain. First of all, I planned to move my race if it looks like we’ll get 6 months of rain in a single 24 hour period! But also, I scheduled my race so that if I do have a few hours of really hard rain, I could choose to take a break and come in and eat/shower/change/rest and go back out later, or extend and finish a lap on the last day or the day after that. I was not running a race that would yank me from the course, but I did have a hard limit after day 5 based on a pre-planned doctor’s appointment that would be a hassle to reschedule, so I needed to finish by the night after day 5. But this gave me the flexibility to take breaks (that I wasn’t really planning to take but was prepared to if I needed to due to weather conditions).

Training for a 200 mile ultramarathon

Like training plans for marathons and 100 milers, the training plans I’ve read about for 200 mile ultramarathons intimidate me. So much mileage! So much time for a slow run/walker like me. I did try to look at sample 200 mile ultra plans and get a sense for what they’re trying to achieve – e.g. when do they peak their mileage before the race, how many back to back runs of what general length in terms of time etc – and then loosely keep that in mind.

But basically, I trained for this 200 mile ultra just like I trained for my marathon, 50k, 100k, and 82 miler. I like to end up doing long runs (which for me are run/walks of 30 seconds run, 60 seconds walk, just like I do shorter runs) of up to around 50k distance. This time, I did two total training runs that were each around 29 miles, just based on the length of the trail I had to run. I could have run longer, but mentally had the confidence that another ~45 minutes per run wasn’t going to change my ability to attempt 50 miles a day for 4 days. If I didn’t have 3 years of this training style under my personal belt, I might feel different about it. That’s longer than many people run, but I find the experience of 7-8 hours of time on my feet fueling, run/walking, and problem solving (including building up my willpower to spend that much time moving) to be what works for me.

The main difference for my 200 is probably also that it’s my 3rd year of ultrarunning. I was able to increase my long runs a little bit more of a time, when historically I used to add 2 miles a time to a long run. I jumped up 4 miles at a time – again, run/walking so very easy on my legs – when building up my long runs, so I was able to end up with 2 different 29 mile runs, two weeks apart, even though I really kicked off training specifically for this 8 weeks prior (10 weeks including taper) to the run. In between I also did a weekend of back to back to back runs (meaning 3 days in a row) where I ran 16 miles, another 16 miles, and 13 miles to practice getting up and running on tired legs. In past cycles I had done a lot more back to back (2-day) with a long and a medium run, but this time I did less of the 2-day and did the one big 3-day since I was targeting a 4-day experience. In future, if I were to do this again, given how well my body held up with all this training, I might have done more back to back, but I took things very cautiously and wanted to not overtrain and cause injury from ramping up too quickly.

As part of that (trying not to over do it), instead of doing several little runs throughout the week I focused on more medium-long runs with my vest and fueling, so I would do something like a long run (starting at 10 miles building up to 29 miles), a medium-long run (8 miles up to 13 miles or 16 miles) and another medium-ish run (usually 8 miles). Three runs a week, and that was it. Earlier in the 8 weeks, I was still doing a lot of hiking off the season, so I had plenty of other time-on-feet experiences. Later in the season I sometimes squeezed in a 4th short run of the week if we wouldn’t be hiking, and ran without my vest and tried to do some ‘speed work’ (aka run a little faster than my easy long run pace). Nothing fancy. Again, this is based on my slow running style (that’s actually a fixed interval of short run and short walk, usually 30 seconds run and 60 seconds walk), my schedule, my personality, and more. If you read this, don’t think my mileage or training style is the answer. But I did want to share what I did and that it generally worked for me.

I did struggle with wondering if I was training “enough”. But I never train “enough” compared to others’ marathon, 50k, 100k, 100 mile plans, either. I’m a low mileage-ish trainer overall, even though I do throw in a few longer runs than most people do. My peak training for marathon, 50k, and 100k is usually around low 50s (miles per week). Surprisingly, this 200 cycle did get me to some mid 60 mile weeks! One thing that also helped me mentally was adding in a rolling 7 day calculation of the miles, not just looking at miles per calendar week. That helped when I shifted some runs around due to scheduling, because I could see that I was still keeping a reasonable 55-low60s mileage over 7 days even though the calendar week total dropped to low 40s because of the way the runs happened to land in the calendar weeks.

Generally, though, looking back at how my training was more than I had accomplished for previous races; I feel better than ever (good fueling really helps!); I didn’t have any accidents or overtraining injuries or niggles; I decided a few weeks before peak that I was training enough and it was the right amount for me.

Another factor that was slightly different was how much hiking I had done this year. I ran my 100k in March then took some time off, promising my husband that we would hike “more” this year. That also coincided with me not really bouncing back from my 100k recovery period: I didn’t feel like doing much running, so we kept planning hiking adventures. Eventually I realized (because I was diagnosed with Graves’ disease last year, I’m having my thyroid and antibody and other related blood work done every 3 months while we work on getting everything into range) that this coincided with my TSH going too high for my body’s happiness; and my disinterest in long runs was actually a symptom (for me) of slightly too-high TSH. I changed my thyroid medication and within two weeks felt HUGELY more interested in long running, which is what coincided with reinvigorating my interest in a fall ultra, training, and ultimately deciding to go for the 200. But in the meantime, we kept hiking a lot – to the tune of over 225 miles hiked and over 53,000 feet of elevation gain! I never tracked elevation gain for hiking before (last year, not sure I retrospectively tracked it all but it was closer to 100 miles – so definitely likely 2x increase), but I can imagine this is definitely >2x above what I’ve done on my previous biggest hiking year, just given the sheer number of hikes that we went out on. So overall, the strengthening of my muscles from hiking helped, as did the time on feet. Before I kicked off my 8 week cycle, we were easily spending 3-4 hours a hike and usually at least two hikes a weekend, so I had a lot of time on feet almost every hike equivalent to 12 or more miles of running at that point. That really helped when I reintroduced long runs and aided my ability to jump my long run in distance by 4 miles at a time instead of more gently progressing it by 2 miles a week as I had done in the past.

How my 200 mile attempt actually went

Spoiler alert: I DNF (did not finish) 200 miles. Instead, I stopped – happily – at 100 miles. But it wasn’t for a lack of training.

Day 1 – 51 miles – All as planned

I set out on lap 1 on Day 1 as planned and on time, starting in the dark with a waist lamp at 6am. It was dark and just faintly cool, but warm enough (51F) that I didn’t bother with long sleeves because I knew I would warm up. (Instead, for all days, I was happy in shorts and a short sleeve shirt when the temps would range from 49F to 76F and back down again.) I only had to run for about an hour in the dark and the sky gradually brightened. It ended up being a cloudy, overcast and nice weather day so it didn’t get super bright first thing, but because it wasn’t wet and cold, it wasn’t annoying at all. I tried to start and stay at an easy pace, and was running slow enough (about ~30s/mile slower than my training paces) that I didn’t have to alter my planned intervals to slow me down any more. All was fairly well and as planned in the first lap. I stopped to use the bathroom at mile 3.5 and as planned at my 8 mile turnaround point, and also stopped to stuff a little more wool in a spot in my shoe a mile later. That added 2 minutes of time, but I didn’t let it bother me and still managed to finish lap 1 at about a 15:08 min/mi average pace, which was definitely faster than I had predicted. I used the bathroom again at the turnaround while my husband re-filled my hydration pack, then I stuffed the next round of snacks in my vest and took off. The bathroom and re-fueling “aid station” stop only took 5 minutes. Not bad! And on I went.

A background-less shot of me in my ultrarunning gear. I'm wearing a grey moisture-wicking visor; sunglasses; a purple ultrarunning vest packed with snacks in front and the blue tube of my hydration pack looped in front; a bright flourescent pink short sleeve shirt; grey shorts with pockets bulging on the side with my phone (left pocket) and skittles and headphones and keys (right pocket), and in this lap I was wearing bright pink shoes. Lap 2 was also pretty reasonable, although I was surprised by how often I wanted a bathroom. My period had started that morning (fun timing), and while I didn’t have a lot of flow, the signals my abdomen was giving my brain was telling me that I needed to go to the bathroom more often than I would have otherwise. That started to stress me out slightly, because I found myself wishing for a bathroom in the longest stretch without trail bathrooms and in a very populated area, the duration of which was about 5.5 miles long. I tried to drink less but was also aware of trying not to under hydrate or imbalance my electrolytes. I always get a little dehydrated during my period; and I was running a multi-day ultra where I needed a lot of hydration and more sodium than usual; this situation didn’t add up well! But I made it without any embarrassing moments on the trail. The second aid station again only took 5 minutes. (It really makes a world of difference to not have to dry off my feet, Desitin them up, and re-do socks and shoes every single aid station like I did last year!) I could have moved faster, but I was trying to not let small minutes of time frazzle me, and I was succeeding with being efficient but not rushed and continuing on my way. I had slowed down some during lap 2, however – dropping from a 15:08 to 15:20ish min/mi pace. Not much, but noticeable.

At sunset, with light blue sky fading to yellow at the horizon behind the row of tall, skinny bush like trees with gaps and a hot air balloon a hundred or so feet off the ground seen between the trees.Lap 3 I did feel more tired. I talked my husband into bringing me my headlamp toward the end of the last lap, instead of me having to carry it for 4+ hours before the sun went down. (Originally, I thought I would need it 2-3 hours into this last lap, but because I was moving so well it was now looking like 4 hours, and it would be a 2-3 mile e-bike ride for him to bring me the lamp when I wanted it. That was a mental win to not have to run with the lamp when I wasn’t using it!) I was still run/walking the same duration of intervals, but slowed down to about 16:01 pace for this lap. Overall, I would be at 15:40 average for the whole day, but the fatigue and my tired feet started to kick in on the third lap between miles 34-51. Plus, I stopped to take a LOT more pictures, because there was a hot air balloon growing in the distance as it was flying right toward me – and then by me next to the trail! It ended up landing next to the soccer fields a mile behind me after it passed me in this picture. I actually made it home right as the sun set and didn’t have to wear my lamp at all that evening.

Day 1 recovery was better and worse than I expected. I sat down and used my foot massager on my still-socked feet, which felt very good. I took a shower after I peeled my socks off and took a look at my feet for the first time. I had one blister that I didn’t know was growing at all pop about an hour before I finished, but it was under some of my pre-taped area. I decided to leave the tape and see how it looked and felt in the morning. I had 2-3 other tiny, not a big deal blisters that I would tape in the morning but didn’t need any attention that night.

I had planned to eat a reasonably sized dinner – preferably around 1000 calories – each night, to help me address my calorie deficit. And I had a big deficit: I had burned 5,447 calories and consumed 3,051 calories in my 13 hours and 13 minutes of running. But I could only eat ¼ of the pizza I planned for dinner, and that took a lot of work to force myself to eat. So I gave up, and went to bed with a 3,846 calorie deficit, which was bigger than I wanted.

And going to bed hurt. I was stiff, which I could deal with, but my feet that didn’t hurt much while running started SCREAMING at me. All over. They hurt so bad. Not blisters, just intense aches. Ouch! I started to doubt my ability to run the next day, but this is where my pre-planning kicked in (aided by my husband who had agreed to the rules we had decided upon): no matter what, I would get up in the morning, get dressed, and go out and start my first lap. If I decided to quit, I could, but I could not quit at night in bed or in the morning in the bed or in the house. I had to get up and go. So I went to sleep, less optimistic about my ability to finish 50 miles again on day 2, but willing to see what would happen.

Day 2: 34 instead of 50 miles, and walking my first ever lap

I actually woke up before my alarm went off on day 2. Because I had finished so efficiently the day before, I was able to again get a good night’s sleep, even with the early alarm and waking up again at 4:30am with plans to be going by 6am. The extra time was helpful, because I didn’t feel rushed as I got ready to go. I spent some extra time taping my new blisters. Because they hadn’t popped, I put small torn pieces of Kleenex against them and used cut strips of kinesio tape to protect the area. (Read “Fixing Your Feet” for other great ultra-related foot care tips; I learned about Kleenex from that book.) I also use lambs’ wool for areas that rub or might be getting hot spots, so I put wool back in my usual places (between big and second toes, and on the side of the foot) plus another toe that was rubbing but not blistered and could use some cushion. I also this year have been trying Tom’s blister powder in my socks, which seems to help since my feet are extra sweat prone, and I had pre-powdered a stack of socks so I could simply slip them on and get going once I had done the Kleenex/tape and wool setup. The one blister that had popped under my tape wasn’t hurting when I pressed on it, so I left it alone and just added loose wool for a little padding.

A pretty view of the trail with bright blue sky after the sun rose with green bushes (and the river out of sight) to the left, with the trail parallel to a high concrete wall of a road with cheery red and yellow leaved trees leaning over the trail.And off I went. I managed to run/walk from the start, and faster than I had projected on my spreadsheets originally and definitely faster than I thought was possible the night before or even before I started that morning. Sure, I was slower than the day before, but 15:40 min/mi pace was nothing to sneeze at, and I was feeling good. I was really surprised that my legs, hips and body did not hurt at all! My multi-day or back-to-back training seemed to pay off here. All was well for most of the first lap (17 miles again), but then the last 2 or so miles, my pace started dipping unexpectedly so I was doing 16+ min/mi without changing my easy effort. I was disappointed, and tired, when I came into my aid station turnaround. I again didn’t need foot care and spent less than 5 minutes here, but I told Scott as I left that I was going to walk for a while, because my feet had been hurting and they were getting worse. Not blisters: but the balls of my feet were feeling excruciating.

A close up of a yellow shelled snail against the paved trail that I saw while walking the world's slowest 17-mile lap on day 2.I headed out, and within a few minutes he had re-packed up and biked up to ride alongside me for a few minutes and chat. I told him I was probably going to need to walk this entire lap. We agreed this was fine and to be expected, and was in fact built into my schedule that I would slow down. I’ve never walked a full lap in an ultra before, so this would be novel to me. But then my feet got louder and louder and I told him I didn’t think I could even walk the full lap. We decided that I should take some Tylenol, because I wasn’t limping and this wouldn’t mask any pain that would be important cues for my body that I would be overriding, but simply muting the “ow this is a lot” screams that the bones in the balls of my feet were feeling. He biked home, grabbed some, and came back out. I took the Tylenol and sent him home again, walking on. Luckily, the Tylenol did kick in and it went from almost unbearable to manageable super-discomfort, so I continued walking. And walking. And walking. It took FOREVER, it felt like, having gone from 15-16 min/mi pace with 30 seconds of running, 60 seconds of walking, to doing 19-20 minute miles of pure walking. It was boring. I had podcasts, music, audiobooks galore, and I was still bored and uncomfortable and not loving this experience. I also was thinking about it on the way back about how I did not want to do a 3rd lap that day (to get me to my planned 50 miles) walking again.

Scott biked out early to meet me and bring me extra ice, because it was getting hot and I was an hour slower than the day before and risking running out of water that lap if he didn’t. After he refilled my hydration pack and brought it back to me while I walked on, I told him I wanted to be done for the day. He pointed out that when I finished this lap, I would be at 34 miles for the day, and combined with the day before (51), that put me at 85 miles, which would be a new distance PR for me since last year I had stopped at 82. That was true, and that would be a nice place to stop for the day. He reminded me of our ‘rules’ that I could go out the next day and do another lap to get me to 100, and decide during that lap what else I wanted to do. I was pretty sure I didn’t want to do more, but agreed I would decide the next day. So I walked home, completing lap 2 and 34 miles for the day, bringing me to 85 miles overall across 2 days.

Day 2 recovery went a little better, in part because I didn’t do 51 miles (only 34) and I had walked rather than ran the second lap, and also stopped earlier in the day (4pm instead of 7pm). I had more time to shower and bring myself to finally eat an entire 1000 calories before going to bed, again with my feet screaming at me. I had more blisters this time, mostly again on my right foot, but the balls of my feet and the bones of my feet ached in a way they never had before. This time, though, instead of setting my alarm to get up and go by 6am, I decided to sleep for longer, and go out a little later to start my first lap. This was a deviation from my plan, but another deviation I felt was the right one: I needed the sleep to help my body recover to be able to even attempt another lap.

Day 3: Only 16 miles, but hitting 100 for the first time ever

Instead of 6am, I set out on Day 3 around 8:30am. I would have taken even longer to go, but the forecast was for a warm day (we ended up hitting 81F) and I wanted to be done with the lap before the worst of the heat. I thought there was a 10% chance I’d keep going after this lap, but it was a pretty small chance. However, I set out for the planned 16 mile lap and was pleasantly surprised that I was run/walking at about a 15:40 pace! Again, better than I had projected (although yes, I had deviated from my mileage plan the day before), and it felt like a good affirmation that stopping the day before instead of slogging out another walking lap was the right thing to do.

After a first few miles, I toyed with the idea of continuing on. But I knew with the heat I probably wouldn’t stand more than one more lap, which would get me to 116. Even if I went out again the fourth day, and did 1-2 laps, that would MAYBE get me to 150, but I doubted I could do that without starting to cause some serious damage. And it honestly wasn’t feeling fun. I had enjoyed the first day, running in the dark, the fog, the daylight, and the twilight, seeing changing fall leaves and running through piles of them. The second day was also fun for the first lap, but the second lap walking was probably what a lot of ultra marathoners call the “death march” and just not fun. I didn’t want to keep going if it wasn’t fun, and I didn’t want to run myself into the ground (meaning to be so worn down that it would take weeks to months to recover) or into injury, especially when the specific milestones didn’t really mean anything. Sure, I wanted to be a 200 mile ultramarathoner, something that only a few thousand people have ever done – but I didn’t want to do it at the expense of my well-being. I spent a lot of time thinking about it, especially miles 4-8, and was thinking about the fact that the day before I had started, I had gone to a doctor’s appointment and had an official diagnosis confirming my fifth autoimmune disease, then proceeded to run (was running) 100 miles. Despite all the fun challenges of running with autoimmune conditions, I’m in really good health and fitness. My training this year went so well and I really enjoyed it. Most of this ultra had gone so well physically, and my legs and body weren’t hurting at all: the weakness was my feet. I didn’t think I could have trained any differently to address that, nor do I think I could change it moving forward. It’s honestly just hard to run that many hours or that many miles, as most ultramarathoners know, and your feet take a beating. Given that I was running on pavement for all of those hours, it can be even harder – or a different kind of hard – than kicking roots and rocks on a dirt trail. I figured I would metaphorically kick myself if I tried for 116 or 134 and injured myself in a way that would take 6-8 weeks to recover, whereas I felt pretty confident that if I stopped after this lap (at 100), I would have a relatively short and easy recovery, no major issues, and bounce back better than I ever have, despite it being my longest ever ultramarathon. Yes, I was doing it as a multi-day with sleep in between, but both in time on feet and in mileage, it was still the most I’d ever done in 2 or 3 days.

And, I was tired of eating. I was fueling SO well. Per my plans, I set out to do >500 mg of sodium per hour and >250 calories per hour. I had been nailing it every lap and every day! Day 1 I averaged 809 mg of sodium per hour and 290 calories per hour. Day 2 was even increased from that, averaging 934 mg of sodium per hour and 303 calories per hour! Given the decreased caloric burn of day 2 because I walked the second lap, my caloric deficit for day 2 was a mere ~882 calories (given that I also managed to eat a full dinner that night), even though I skipped the last hour as I finished the walking lap. Day 3 I was also fueling above my goals, but I was tired of it. Sooooo tired of it. Remember, I have to take a pill every time I eat, because I have exocrine pancreatic insufficiency (EPI or PEI). I was eating every 30 minutes as I ran or walked, so that meant swallowing at least one pill every 30 minutes. I had swallowed 57 pills on Day 1 and 48 pills on Day 2, between my enzymes and electrolyte pills. SO MANY PILLS. The idea of continuing to eat constantly every 30 minutes for another lap of ~5 or more hours was also not appealing. I knew if I didn’t eat, I couldn’t continue.

A chart with an hourly break down of sodium, calories, and carbs consumed per hour, plus totals of caloric consumption, burn, and calculated deficit across ~27 hours of move time to accomplish 100 miles run.

And so, I decided to stop after one more lap on day 3, even though I was holding up a respectable 15:41 min/mi pace throughout. I hit 100 miles and finished the lap at home, happy with my decision.

Two pictures of me leaning over after my run holding a sign (one reading 50 miles, one reading 100 miles) for each of my cats to sniff.(You can see from these two pictures that I smelled VERY interesting, sweaty and salty and exhausted at the end of day 1 and day 3, when I hit 50 miles and 100 miles, respectively. We have two twin kittens (now 3 years old) and one came out to sniff me first on the first day, and the other came out as I came home on the third day!)

Because I had only run one final lap (16 miles) on day 3, and had so many bonus hours in the rest of the day afterward when I was done and home, I was able to eat more and end up with only a 803 calorie deficit for the day. So overall, day 1 had the biggest deficit and probably influenced my fatigue and perception of pain on day 2, but because I had shortened day 2 and then day 3, my very high calorie intake every hour did a pretty good job matching my calorie expenditure, which is probably why I felt very little muscle fatigue in my body and had no significant sore areas other than the bottoms of my feet. I ended up averaging 821 mg/hr of sodium and 279 calories per hour (taking into account the fact that I skipped two final snacks at the end of day 2 when I was walking it out; ignoring that completely skipped hour would mean the average caloric intake on hours I ate anything at all was closer to 290 calories/hr!)

In total, I ended up consuming 124 pills in approximately 27 hours of move time across my 100 miles. (This doesn’t include enzyme pills for my breakfast or dinners each of those days, either – just the electrolyte and enzyme pills consumed while running!)

AFTERMATH

Recovery after day 3 was pretty similar to day 2, with me being able to eat more and limit my calorie deficit. I’ve had long ~30 mile training runs where I wasn’t very hungry afterward, but it surprised me that even two days after my ultra, I still haven’t really regained my appetite. I would have figured my almost 4000 calorie deficit from day 1 would drive a lot of hunger, so this surprised me.

So too has my physical state: 48 hours following the completion of my 100 miles, I am in *fantastic* shape compared to other multi-day back to back series of runs I’ve done, ultramarathons or not. The few blisters I got, mainly on my right foot, have already flattened themselves up and mostly vanished. I think I get more blisters on my right foot because of breaking my toe last year: my right foot now splays wider in my shoe, so it tends to get more blisters and cause more trouble than my left foot. I got only one blister on my left foot, which is still fluid filled but not painful and starting to visibly deflate now that I’m not rubbing it onto a shoe constantly any more. And my legs don’t feel like I ran at all, let alone running 51+34+16 miles!

I am tired, though. I don’t have brain fog, probably because of my excellent fueling, but I am fatigued in terms of overall energy and lack of motivation to get a lot done yesterday and today (other than writing this blog post!). So that’s probably pretty on par with my effort expended and matches what I expected, but it’s nice to be able to move around without hurting (other than my feet).

My feet in terms of general aches and ows are what came out the worst from my run. Day 2, what hurt was the bottom of the balls of my feet. Starting each night though, I was getting aches all over in all of the bones of my feet. After day 3, that night the foot aches were particularly strong, and I took some Tylenol to help with that. Yesterday evening and today though, the ache has settled down to very minor and only occasionally noticeable. The tendon from the top of my left foot up my ankle is sore and gets cranky when I wear my sneakers (although it didn’t bother me at all while running any of the days), so after tying and re-tying my shoelaces 18 times yesterday to try to find the perfect fit for my left foot, today I went on my recovery walk in flip flops and was much happier.

What I’m taking away from this 200 mile attempt that was only 100 miles:

I feel a little disappointed that I didn’t get anywhere near 200 miles, but obviously, I was not willing to hurt long enough or hard enough to get there. My husband called it a stretch goal. Rationally, I am very happy with my choices to stop at 100 and end up in the fantastic physical shape that I am in, and I recognize that I made a very rational choice and tradeoff between ending in good shape (and health) and the mainly ego-driven benefits of possibly achieving 200 miles (for me).

Would I do anything different? I can’t think of anything. If I somehow had an alternate do-over, I can’t think of anything I would think to change. I’d like to reduce my risk of blisters but I’m already doing all I can there, and dealing with changes in my right foot shape post-broken toe that I have no control over. And I’m not sure how to train more/better for reducing the bottom ball of foot pain that I got: I already trained multiple days, back to back, long hours of feet on pavement. It’s possible that having my doctor’s appointment the day before I started influenced my mental calculation of my future risk/benefit tradeoff of continuing more miles, and so not having had that then may have changed my calculations to do another lap or two, or go out on the 4th day (which I did not). But, I don’t have a do over, and I’ll never know, and I’m not too upset about that because I was able to control what I could control and am again pretty happy with the outcomes. 100 or 150 miles felt about the same to me, psychologically, in terms of satisfaction.

What I would tell other people about attempting multiple day ultramarathons or 200 mile ultramarathons:

Training back to back days is one option, as is long spurts of time on feet walking/hiking/running. I don’t think “just running” has to be the only way to train for these things. I’m also a big proponent of short intervals: If you hear people recommend taking walk breaks, it doesn’t have to be 1 minute every 10 minutes or every mile. It can be as short as every 30 seconds of running, take a walk break! There’s no wrong way to do it, whatever makes your body and brain happy. I get bored running longer (and don’t like it); other people get bored running the short intervals that I do – so find what works for you and what you’re actually willing to do.

Having plans for how you’ll rest X hours and go out and try to make it another lap or to the next aid station works really well, especially if you have crew/pacers/support (for me, my husband) who will stick to those rules and help you get back out there to try the next lap/section. Speaking of sleep/rest, laying down for a while helps as much as sleeping, so even if you can’t sleep, committing to the rest of X hours is also good for resting your feet and everything. I found that the hour laying down before I fell asleep helped my body process the noise of the “ouch” from my feet and it was a lot easier to sleep after that. Plan that you’ll have some down/up time before and after your sleep/rest time, and figure that into your time plans accordingly.

The cheesy “know your why” and “know what you want” recommendations do help. I didn’t want 200 miles badly enough to hurt more for longer and risk months of recovery (or the inability to recover). Maybe you’d be lucky enough to achieve 200 without hurting that bad, that long, or risking injury – or maybe you’ll have to make that choice, and you might make it differently than I did. (Maybe you’re lucky enough to not have 5 autoimmune things to juggle! I hope you don’t have to!) I kind of knew going in that I was only going to hit 200 if all went perfect.

Diabetes and this 200 mile ultramarathon that was a 100 mile ultra:

I just realized that I managed to write an ENTIRE race report without talking about diabetes and glucose management…because I had zero diabetes-related thoughts or issues during these several days of my run! Sweet! (Pun fully intended.)

Remember, I have type 1 diabetes and use an open source automated insulin delivery (AID) system (in my case, still using OpenAPS after alllllll these years), and I’ve talked previously about how I fuel while ultrarunning and juggling blood glucose management. Unlike previous ultras, I had zero pump site malfunctions (phew) and my glucose stayed nicely in range throughout. I think I had one small drift above range for 2 hours due to an hour of higher carb activity right when I shifted to walking the second lap on day 2, but otherwise was nicely in range all days and all nights without any extra thought or energy expended. I didn’t have to take a single “low carb”/hypoglycemia treatment! I think there was one snack I took a few minutes early when I saw I was drifting down slightly, but that was mostly a convenience thing and I probably would not have gone low (below target) even if I had waited for my planned fuel interval. But out of 46 snacks, only one 5-10 minutes early is impressive to me.

I had no issues after each day’s run, either: OpenAPS seamlessly adjusted to the increasing insulin sensitivity (using “autosensitivity” or “autosens”) so I didn’t have to do manual profile shifts or overrides or any manual interference. I did decide each night whether I wanted to let it SMB (supermicrobolus) as usual or stick to temp basal only to reduce the risk of hypoglycemia, but I had no post-dinner or overnight lows at all.

The most “work” I had to do was deciding to wear a second CGM sensor (staggered, 5 days after my other one started) so that I had a CGM sensor session going with good quality data that I could fall back to if my other sensor started to get jumpy, because the sensor session was supposed to end the night of day 4 of my planned run. I obviously didn’t run day 4, but even so I was glad to have another sensor going (worth the cost of overlapping my sensors) in order to have the reassurance of constant data if the first one died or fell out and I could seamlessly switch to an already-warmed up sensor with good data. I didn’t need it, but I was glad to have done that in prep.

(Because I didn’t talk about diabetes a lot in this post, because it was not very relevant to my experiences here, you might want to check out my previous race recaps and posts about utlrarunning like this one where I talk in more detail about balancing fueling, insulin, and glucose management while running for zillions of hours.)

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TLDR: I ran 100 miles, and I did it my DIY way: my own course, my own (slow pace), with sleep breaks, a lot of fueling, and a lot of satisfaction of setting big goals and attempting to achieve them. I think for me, the process goals of figuring out how to even safely attempt ultramarathons are even more rewarding than the mileage milestones of ultrarunning.

Running a multi-day ultramarathon by Dana M. Lewis from DIYPS.org

A Crouton In Your Salad (Or COVID In The Air)

by Dana Lewis

Look, I get it: you don’t care about a crouton in your salad.

If you don’t like croutons, you simply pick them out of your salad and nudge them to the side of your plate. No harm done.

But for me, a crouton in my salad IS harm done. Even if I were (or the restaurant were) to pick off the croutons, the harm is done. There are specks and crumbs of gluten remaining in my food, and since I have celiac disease, my body is going to overreact to microscopic flecks of gluten and cause damage to my intestines and actively block absorbing the nutrients in the other food that I’m eating.

You might scoff at this concept, but one of the reasons celiac is so risky is because there are both the short term effects (days of abdominal pain, for example) and the long-term risk of causing holes in my intestine and drastically increasing the risk of stomach cancer, if I were to continue consuming gluten.

Some people with celiac aren’t symptomatic, meaning, they could eat the specks (or heck, chunks) of gluten and not feel what I feel.

When I eat specks of gluten? Bad news bears. Literally. It feels like bears clawing at my insides for hours, then days of abdominal soreness, headaches, and feeling unwell. That’s from a SPECK of gluten. I have a strong symptomatic response, so that makes it easier – perhaps – for me than for those with celiac without symptomatic response to choose to be very, very careful and avoiding cross-contamination in my food, and lower my long-term risk of things like stomach cancer that is linked to celiac long-term.

But knowing what I know about how my brain works and the rest of what I’m dealing with, I can imagine the alternative that if I was asymptomatic but lucky enough to discover that I did have celiac disease (through routine screening), I would probably still go to 99% of the same lengths that I do now to avoid gluten and cross-contamination of gluten, because of the long-term risks being so high.

I also don’t have celiac in a silo. I also have type 1 diabetes, which raises my risk of other things…and now I also have exocrine pancreatic insufficiency (EPI) which means every meal I am fighting to supply the right amount of enzymes to successfully digest my food, too. Oh, and now I also have Graves’ disease, so while my thyroid levels are nicely in range and always have been, I’m fighting battles with invisible ghosts in my body (thyroid-related antibodies) that are causing intermittent swelling of my eyelids and messing with my heart rate to tell me that there’s something going on in my body that I have no direct control over.

My plate is already full. (Or my dance card is already full, if you prefer that analogy). I don’t want, and can’t mentally envision right now, handling another thing. I work really hard every day to keep myself in good health. That involves managing my glucose levels and insulin delivery (for Type 1 diabetes), taking my thyroid-related medication that might be helping bring my antibody levels down and monitoring for symptoms to better provided feedback to the 6-week loop of data I get from blood testing to decide how we should be treating my Graves’, to thinking about EVERY SINGLE THING I put in my mouth so that I can take the right amount of enzymes for it, to making sure EVERY SINGLE THING I put in my mouth is gluten-free and is safe from cross-contamination.

Every meal. Every snack. Every drink. Every day.

Probably for the rest of my life: I can’t stop thinking about or doing those things.

Perhaps, then, if you could imagine being in this situation (and I’m so glad most of you are not!), you can imagine that I work really hard to make things easier and better for myself. Both with the plate that I’ve been given, but also in doing my best to lower the risk of more things being added to my already over-loaded plate.

(Preface for this next section: this is about ME not about YOU.)

COVID is one such example. I have worked very hard to avoid COVID, and I am still working very hard to avoid COVID. Like celiac and EPI, if I were to get COVID or other viral illnesses (like the flu), there is the risk of feeling very bad for a short period of time (e.g. 5-7 days). (I’m vaccinated, so the risk of short-term illness being severe (e.g. hospitalization, death) is lowered, and is probably at the same risk as being hospitalized for flu. Even when vaccinated for flu, I’ve been sick enough to almost be hospitalized, which is also why I don’t discount this risk, albeit recognizing it is lower with vaccination).

But like celiac and EPI, if I were to get COVID etc, that increases health risks for the long-term. This is true of most viral illnesses. And when you have an autoimmune condition which indicates your body is a super-star at overreacting to things (which causes other autoimmune conditions), you can imagine that poking the bear is going to make the bear (over)react, whether it is in the short-term or long-term.

It’s not so much if, but when, I would get handed my FIFTH chronic condition if I do get COVID. I went from two (type 1 diabetes and celiac) to four (adding EPI and Graves’) within the course of the same year. This is without having COVID. Given the data showing the increased risk in the long-term of developing many other conditions following COVID, even in people who don’t have superstar overreactive immune systems, it is easy to draw a dotted line to predict the future post-COVID infection to imagine it is not if, but when, my fifth thing would develop and get added to my plate.

So this is why I choose to do things differently than perhaps you do. I mask in indoor spaces. I am currently still choosing to avoid indoor dining. I don’t mind if you choose to do differently; I similarly don’t begrudge you eating croutons. But just like I wouldn’t expect you to pelt me with croutons and yell at me for not eating croutons when you can, I also prefer people not to propel possibly-infectious air at me at short-range when I am unmasked, which is why I prefer to be masked in indoor public spaces. The air is lava (or crouton dust) to me in terms of COVID.

Again, the point here is not to convince you to act any differently than you are acting. You do you! Eat your croutons, do what you like in regard to breathing the air however you like.

But like most folks are 100% fantastic about respecting that I’m not going to eat flecks of croutons, I wish folks would be more understanding of all the background situations behind my (and others’) choices regarding masking or avoiding indoor dining. What I do is not hurting someone else, whether it is not eating croutons or choosing to be masked in an indoor space.

Why would someone want to force me to eat a crouton, knowing it would cause immense harm in the short-term and contribute to long-term damage to my body and increase the risk of life-ending harm?

This is the direction in which I wish we could shift thinking about individual behaviors. Me wearing a mask is like me not eating croutons. Also, I don’t usually ask people to not eat croutons, but many of my friends and family will be happy to agree to eat at a 100% gluten free place if that’s the best option, because it doesn’t harm them not to eat gluten on occasion. Sometimes we do eat at a place that serves gluten, and they eat their croutons without thinking about it. I’m fine with that, too, as long as I am not asked or put at risk of having my mouth be stuffed with crouton dust. That’s how, maybe, I wish people would think about masking. Even if you don’t typically wear masks because you don’t feel you need to, you might choose to occasionally mask indoors when you’re around others who are masking to protect themselves. Like eating at a gluten free restaurant with your friends on occasion, it probably won’t be a big deal for you. You get plenty of gluten at other times. Then you can go back to eating your usual dietary choices (croutons all day, not masking).

COVID is interesting because it is something that potentially impacts all of us, which is why I think maybe the dynamics are changed. Someone might say “oh sure, I wouldn’t throw croutons at you or yell at you for choosing not to eat gluten”. But some people might also think they have the right to judge me regarding my choices around showing up somewhere masked, because they are ‘in the same situation’ and are choosing differently than I.

But my point is: this is not the same situation, the risks to me are not the same, which is why I may choose differently.

TLDR – I guess the point is, what looks like the ‘same’ situation on the outside is not the same for everyone; these differences influence our individual choices and needs; and I wish this is the way more people saw things.

A Crouton In Your Salad (or COVID in the air) by Dana M. Lewis on DIYPS.org

How to Pick Food (Fuel) For Ultramarathon Running

by Dana Lewis

I’ve previously written about ultrarunning preparation and a little bit about how I approach fueling. But it occurred to me there might be others out there wondering exactly HOW to find fuel that works for them, because it’s an iterative process.

The way I approach fueling is based on a couple of variables.

First and foremost, everything has to be gluten free (because I have celiac). So that limits a lot of the common ultrarunning fuel options. Things like bars (some are GF, most are not), Uncrustables, PopTarts, and many other common recommendations in the ultra community just aren’t an option for me. Some, I can find or make alternatives to, but it’s worth noting that being gluten free for celiac (where cross-contamination is also an issue, not just the ingredients) or having a food allergy and being an ultrarunner can make things more challenging.

Then, I also have exocrine pancreatic insufficiency. This doesn’t limit what I eat, but it factors in to how I approach ideal fueling options, because I have to match the enzyme amounts to the amount of food I’m eating. So naturally, the pill size options I have of OTC enzymes (one is lipase only and covers ~6g of fat for me, the other is a multi-enzyme option that includes protease to cover protein, and only enough lipase to cover ~4g of fat for me; I also have one much larger that covers ~15g of fat but I don’t typically use this one while running) influence the portion sizes of what I choose.

That being said, I probably – despite EPI – still tend toward higher fat options than most people. This is in part because I have had type 1 diabetes for 20+ years. While I by no means consume a low c-a-r-b diet, I typically consume less than the people with insulin-producing pancreases in my life, and lean slightly toward higher fat options because a) my taste buds like them and b) they’ve historically had less impact on my glucose levels. Reason A is probably the main reason now, thanks to automated insulin delivery, but regardless of reason, 20+ years of a higher level than most people’s fat consumption means I’m also probably better fat-adapted for exercise than most people.

Plus, ultrarunning tends to be slower than shorter runs (like marathons and shorter for most people), so that’s also more amenable to fat and other nutrient digestion. So, ultrarunners in general tend to have more options in terms of not just needing “gu” and “gel” and “blocks” and calorie-sugar drinks as fuel options (although if that is what you prefer and works well for you, great!).

All of these reasons lead me toward generally preferring fuel portions that are:

  1. Gluten free with no cross-contamination risk
  2. ~20g of carbs
  3. ~10g of fat or less
  4. ~5-10g of protein or less

Overall, I shoot for consuming ~250 calories per hour. Some people like to measure hourly fuel consumption by calories. Others prefer carb consumption. But given that I have a higher tolerance for fat and protein consumption – thanks to the enzymes I need for EPI plus decades of practice – calories as a metric for hourly consumption makes sense for me. If I went for the level of carb intake many recommend for ultrarunners, I’d find it harder to consistently manage glucose levels while running for a zillion hours. I by no means think any of my above numbers are necessarily what’s best for anyone else, but that’s what I use based on my experiences to date as a rough outline of what to shoot for.

After I’ve thought through my requirements: gluten free, 250 calories per hour, and preferably no single serving portion size that is greater than 20ish grams of carbs or 10g of fat or 5-10g or protein, I can move on to making a list of foods I like and that I think would “work” for ultrarunning.

“Work” by my definition is not too messy to carry or eat (won’t melt easily, won’t require holding in my hands to eat and get them messy).

My initial list has included (everything here gluten free):

  • Oreos or similar sandwich type cookies
  • Yogurt/chocolate covered pretzels
  • PB or other filled pretzel nuggets
  • Chili cheese Fritos
  • Beef sticks
  • PB M&M’s
  • Reese’s Pieces
  • Snickers
  • Mini PayDays
  • Macaroons
  • Muffins
  • Fruit snacks
  • Fruit/date bars
  • GF (only specific flavors are GF which is why I’m noting this) of Honey Stinger Stroopwaffles

I wish I could include more chip/savory options on my lists, and that’s something I’ve been working on. Fritos are easy enough to eat from a snack size baggie without having to touch them with my hands or pull individual chips out to eat; I can just pour portions into my mouth. Most other chips, though, are too big and too ‘sharp’ feeling for my mouth to eat this way, so chili cheese Fritos are my primary savory option, other than beef sticks (that are surprisingly moist and easy to swallow on the run!).

Some of the foods I’ve tried from the above list and have eventually taken OFF my list include:

  • PB pretzel nuggets, because they get stale in baggies pretty fast and then they feel dry and obnoxious to chew and swallow.
  • Muffins – I tried both banana muffin halves and chocolate chip muffin halves. While they’re moist and delicious straight out of the oven, I found they are challenging to swallow while running (probably because they’re more dry).
  • Gluten free Oreos – actual Oreo brand GF Oreos, which I got burnt out on about the time I realized I had EPI, but also they too have a pretty dry mouthfeel. I’ve tried other brand chocolate sandwich cookies and also for some reason find them challenging to swallow. I did try a vanilla sandwich cookie (Glutino brand) recently and that is working better – the cookie is harder but doesn’t taste as dry – so that’s tentatively on my list as a replacement.

Other than “do I like this food” and “does it work for carrying on runs”, I then move on to “optimizing” my intake in terms of macronutrients.  Ideally, each portion size and item has SOME fat, protein, and carbs, but not TOO MUCH fat, protein and carbs.

Most of my snacks are some fat, a little more carb, and a tiny bit of protein. The outlier is my beef sticks, which are the highest protein option out of my shelf-stable running fuel options (7g of fat, 8g of protein). Most of the others are typically 1-3g of protein, 5-10g of fat (perfect, because that is 1-2 enzyme OTC pills), and 10-20g of carb (ideal, because it’s a manageable amount for glucose levels at any one time).

Sometimes, I add things to my list based on the above criteria (gluten free with no cross-contamination list; I like to eat it; not messy to carry) and work out a possible serving size. For example, the other day I was brainstorming more fuel options and it occurred to me that I like brownies and a piece of brownie in a baggie would probably be moist and nice tasting and would be fine in a baggie. I planned to make a batch of brownies and calculated how I would cut them to get consistent portion sizes (so I would know the macronutrients for enzymes).

However, once I made my brownies, and started to cut them, I immediately went “nope” and scratched them off my list for using on runs. Mainly because, I hate cutting them and they crumbled. The idea of having to perfect how to cook them to be able to cut them without them crumbling just seems like too much work. So I scratched them off my list, and am just enjoying eating the brownies as brownies at home, not during runs!

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I first started taking these snacks on runs and testing each one, making sure that they tasted good and also worked well for me (digestion-wise) during exercise, not just when I was sitting around. All of them, other than the ones listed above for ‘dry’ reasons or things like brownies (crossed off because of the hassle to prepare), have stayed on the list.

I also started looking at the total amount of calories I was consuming during training runs, to see how close I was to my goal of ~250 calories per hour. It’s not an exact number and a hard and fast “must have”, but given that I’m a slower runner (who run/walks, so I have lower calorie burn than most ultrarunners), I typically burn in the ballpark of ~300-400 calories per hour. I generally assume ~350 calories for a reasonable average. (Note, again, this is much lower than most people’s burn, but it’s roughly my burn rate and I’m trying to show the process itself of how I make decisions about fuel).

Aiming for ~250 calories per hour means that I only have a deficit of 100 calories per hour. Over the course of a ~100 mile race that might take 30 hours, this means I’ll “only” have an estimated deficit of 3,000 calories. Which is a lot less than most people’s estimated deficit, both because I have a lower burn rate (I’m slower) and because, as described above and below, I am trying to be very strategic about fueling for a number of reasons, including not ending up under fueling for energy purposes. For shorter runs, like a 6 hour run, that means I only end up ~600 calories in deficit – which is relatively easy to make up with consumption before and after the run, to make sure that I’m staying on top of my energy needs.

It turns out, some of my preferred snacks are a lot lower and higher calories than each other! And this can add up.

For example, fruit snacks – super easy to chew (or swallow without much chewing). 20g of carb, 0g of fat or protein, and only 80 calories. Another easy to quickly chew and swallow option: a mini date (fruit) bar. 13g carb, 5g fat, 2 protein. And…90 calories. My beef stick? 7g of fat, 8g of protein, and only 100 calories!

My approach that works for me has been to eat every 30 minutes, which means twice per hour. Those are three of my favorite (because they’re easy to consume) fuel options. If I eat two of those in the same hour, say fruit snacks and the date bar, that’s only 170 calories. Well below the goal of 250 for the hour! Combining either with my beef stick (so 180 or 190 calories, depending), is still well below goal.

This is why I have my macronutrient fuel library with carbs, fat, protein, *and* calories (and sodium, more on that below) filled out, so I can keep an eye on patterns of what I tend to prefer by default – which is often more of these smaller, fewer calorie options as I get tired at the end of the runs, when it’s even more important to make sure I’m at (or near) my calorie goals.

Tracking this for each training run has been really helpful, so I can see my default tendency to choose “smaller” and “easier to swallow” – but that also means likely fewer calories – options. This is also teaching me that I need to pair larger calorie options with them or follow on with a larger calorie option. For example, I have certain items on my list like Snickers. I get the “share size” bars that are actually 2 individual bars, and open them up and put one in each baggie. ½ of the share size package (aka 1 bar) is 220 calories! That’s a lot (relative to other options), so if I eat a <100 calorie option like fruit snacks or a date bar, I try to make it in the same hour as the above average option, like the ½ snickers. 220+80 is 300 calories, which means it’s above goal for the hour.

And that works well for me. Sometimes I do have hours where I am slightly below goal – say 240 calories. That’s fine! It’s not precise. But 250 calories per hour as a goal seems to work well as a general baseline, and I know that if I have several hours of at or greater than 250 calories, one smaller hour (200-250) is not a big deal. But this tracking and reviewing my data during the run via my tracking spreadsheet helps make sure I don’t get on a slippery slope to not consuming enough fuel to match the demands I’m putting on my body.

And the same goes for sodium. I have read a lot of literature on sodium consumption and/or supplementation in ultrarunning. Most of the science suggests it may not matter in terms of sodium concentration in the blood and/or muscle cramps, which is why a lot of people choose sodium supplementation. But for me, I have a very clear, distinct feeling when I get not enough sodium. It is almost like a chemical feeling in my chest, and is a cousin (but distinct) feeling to feeling ketones. I’ve had it happen before on long hikes where I drank tons to stay hydrated and kept my glucose levels in range but didn’t eat snacks with sodium nor supplement my water. I’ve also had it happen on runs. So for me, I do typically need sodium supplementation because that chemical-like feeling builds up and starts to make me feel like I’m wheezing in my chest (although my lungs are fine and have no issues during this). And what I found works for me is targeting around 500mg/hour of sodium consumption, through a combination of electrolyte pills and food.

(Side note, most ultrarunning blogs I’ve read suggest you’ll be just fine based on food you graze at the aid station. Well, I do most of my ultras as solo endeavors – no grazing, everything is pre-planned – and even if I did do an organized race, because of celiac I can’t eat 95% of the food (due to ingredients, lack of labeling, and/or cross contamination)…so that just doesn’t work for me to rely on aid station food to supplement me sodium-wise. But maybe it would work for other people, it just doesn’t for me given the celiac situation.)

I used to just target 500mg/hour of sodium through electrolyte pills. However, as I switched to actually fueling my runs and tracking carbs, fat, protein, and calories (as described above), I realized it’d be just as easy to track sodium intake in the food, and maybe that would enable me to have a different strategy on electrolyte pill consumption – and it did!

I went back to my spreadsheet and re-added information for sodium to all of my food items in my fuel library, and added it to the template that I duplicate for every run. Some of my food items, just like they can be outliers on calories or protein or fat or carbs, are also outliers on sodium. Biggest example? My beef stick, the protein outlier, is also a sodium outlier: 370mg of sodium! Yay! Same for my chili cheese Fritos – 210mg of sodium – which is actually the same amount of sodium that’s in the type of electrolyte pills I’m currently using.

I originally had a timer set and every 45 minutes, I’d take an electrolyte pill. However, in the last year I gradually realized that sometimes that made me over by quite a bit on certain hours and in some cases, I ended up WAY under my 500mg sodium goal. I actually noticed this in the latter portion of my 82 mile run – I started to feel the low-sodium chest feeling that I get, glanced at my sheet (that I hadn’t been paying close attention to because of So. Much. Rain) and realized – oops – that I had an hour of 323mg of sodium followed by a 495mg hour. I took another electrolyte pill to catch up and chose some higher sodium snacks for my next few fuels. There were a couple hours earlier in the run (hours 4 and 7) where I had happened to – based on some of my fresh fuel options like mashed potatoes – to end up with over 1000mg of sodium. I probably didn’t need that much, and so in subsequent hours I learned I could skip the electrolyte pill when I had had mashed potatoes in the last hour. Eventually, after my 82-mile run when I started training long runs again, I realized that keeping an eye on my rolling sodium tallies and tracking it like I tracked calories, taking an electrolyte pill when my hourly average dropped <500mg and not based on a pre-set time when it was >500mg, began to work well for me.

And that’s what I’ve been experimenting with for my last half dozen runs, which has worked – all of those runs have ended up with a total average slightly above 500mg of sodium and slightly above 250 calories for all hours of the run!

An example chart that automatically updates (as a pivot table) summarizing each hour's intake of sodium and calories during a run. At the bottom, an average is calculated, showing this 6 hour run example achieved 569 mg/hr of sodium and 262 calories per hour, reaching both goals.

Now, you may be wondering – she tracks calories and sodium, what about fat and protein and carbs?

I don’t actually care about or use these in real-time for an hourly average; I use these solely as real-time decision in points as 1) for carbs, to know how much insulin I might need dependent on my glucose levels at the time (because I have Type 1 diabetes); and 2) the fat and protein is to make sure I take the right amount of enzymes so I can actually digest the fuel (because I have exocrine pancreatic insufficiency and can’t digest fuel without enzyme pills). I do occasionally look back at these numbers cumulatively, but for the most part, they’re solely there for real-time decision making at the moment I decide what to eat. Which is 95% of the time based on my taste buds after I’ve decided whether I need to factor in a higher calorie or sodium option!

For me, my higher sodium options are chili cheese Fritos, beef stick, yogurt covered pretzels.

For me, my higher calorie options are the ½ share size Snickers; chili cheese Fritos; Reese’s pieces; yogurt covered pretzels; GF honey stinger stroopwaffle; and 2 mini PayDay bars.

Those are all shelf-stable options that I keep in snack size baggies and ready to throw into my running vest.

Most of my ‘fresh’ food options, that I’d have my husband bring out to the ‘aid station’/turnaround point of my runs for refueling, tend to be higher calorie options. This includes ¼ of a GF PB&J sandwich (which I keep frozen so it lasts longer in my vest without getting squishy); ¼ of a GF ham and cheese quesadilla; a mashed potato cup prepared in the microwave and stuck in another baggie (a jillion, I mean, 690mg of sodium if you consume the whole thing but it’s occasionally hard to eat allll those mashed potatoes out of a baggie in one go when you’re not actually very hungry); sweet potato tots; etc.

So again, my recommendation is to find foods you like in general and then figure out your guiding principles. For example:

  • Do you have any dietary restrictions, food allergies or intolerances, or have already learned foods that your body Does Not Like while running?
  • Are you aiming to do carbs/hr, calories/hr, or something else? What amounts are those?
  • Do you need to track your fuel consumption to help you figure out how you’re not hitting your fuel goals? If so, how? Is it by wrappers? Do you want to start with a list of fuel and cross it off or tear it off as you go? Or like me, use a note on your phone or a drop down list in your spreadsheet to log it (my blog post here has a template if you’d like to use it)?

My guiding principles are:

  • Gluten free with no cross contamination risk (because celiac)
  • ~250 calories per hour, eating twice per hour to achieve this
  • Each fuel (every 30 min) should be less than ~20g of carb, ~10g of fat, and ~5-10g of protein
  • I also want ~500mg of sodium each hour through the 2x fuel and when needed, electrolyte pills that have 210mg of sodium each
  • Dry food is harder to swallow; mouthfeel (ability to chew and swallow it) is something to factor in.
  • I prefer to eat my food on the go while I’m run/walking, so it should be all foods that can go in a snack or sandwich size baggie in my vest. Other options (like chicken broth, soup, and messy food items) can be on my backup list to be consumed at the aid station but unless I have a craving for them, they are secondary options.
  • Not a hassle to make/prepare/measure out into individual serving sizes.

Find foods that you like, figure out your guiding principles, and keep revising your list as you find what options work well for you in different situations and based on your running needs!

Food (fuel) for ultramarathon running by Dana Lewis at DIYPS.org

Two New Children’s Books – And How I Illustrated Them Without Being An Illustrator

by Dana Lewis

I wrote two new books! You can find “Cooper’s Crutches” and “Chloe’s Cookies” on Amazon in paperback and Kindle formats.

Two children's books lay on the carpet: Cooper's Crutches and Chloe's Cookies, both written by Dana M. Lewis

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One of these books I wrote years ago, about a month or so after I broke my ankle, inspired by the initial reactions from one of my nephews about me being on crutches. This new book is called Cooper’s Crutches.

I let it sit for several years, though, because I didn’t have illustrations for it. I’ve used a different illustrator or artist for each of my books so far.

A few weeks ago, though, I started thinking about experimenting with AI-driven illustrations for various projects, including wondering whether I could illustrate a children’s book or other projects with it.

The answer is: not yet. It’s hard to create a character who persists throughout image generation for enough scenes that can fit a two-dozen page storyline, although it would probably work for one or two images! (Especially if you managed to AI-illustrate a character that you could then place in various AI-illustrated scenes. The challenge is also having different poses for the same character, to illustrate a story.)

It then occurred to me to search around and I stumbled across a library of free, open source illustrations. Woohoo! Maybe those would work. Actually, I couldn’t even download that one due to a bug in their site, so I started searching (now that I knew to look for it) and found several other sets of illustrations. I even found a site called Blush that had a series of illustrations by various artists, and a web interface (GUI) that allowed you to modify images slightly then download them.

It’s like paper dolls, but digital – you can adjust the coloring of the hair, hair style, accessories, etc to modify the illustrated character.

I gave it a try, building some illustrations and downloading them. I then did some DIY-ing again in PowerPoint to modify them to help illustrate the full story in my children’s book. I printed a proof copy, but the versions I had downloaded for free were too low resolution and were fuzzy. However, the idea as a whole had worked great! I signed up for a free trial of the “Pro” version of Blush which enabled me to download both high-resolution PNG (image) files as well as SVG files.

Having SVG files theoretically would enable me to further modify and customize these, but as a non-illustrator even though I could load them in Figma and modify them, I still struggled to export them as high-enough resolution to work for printing in a book. I gave up and went back to DIY-ing the modifications in PowerPoint. They’re not perfect, but for the use case of my books (for a very small, niche audience), I doubt they care that they’re not perfect.

Here’s a selection of a few of the pages (not in order) in Cooper’s Crutches:

Excerpt images from Cooper's Crutches by Dana M. Lewis

At the same time that I started playing with these illustrations, I wondered whether I had any more ideas for books that I could illustrate at the same time with the same methods. I had had Cooper’s book written and waiting to illustrate; I now had a method to illustrate, but I wasn’t sure what story to illustrate.

But like all of my children’s books, inspiration again struck based on a situation and conversation I had with one of my nieces. She’s newly lactose intolerant and is taking lactase any time she has milk, like with milk and cookies for a bedtime snack. Lactase is an enzyme…and I’ve been taking enzymes of another sort this year, for exocrine pancreatic insufficiency.

Thus the next book, Chloe’s Cookies, was created!

Here’s a selection of a few of the pages (not in order) in the book:

Excerpt images from Chloe's Cookies, by Dana M. Lewis

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Both Cooper’s Crutches and Chloe’s Cookies are illustrated with illustrations from a variety of artists who make their work available on Blush, including: Veronica Iezzi; Susana Salas; Pau Barbaro; Ivan Mesaroš; Mariana Gonzalez Vega; Deivid Saenz; and Cezar Berje.

The neat thing about Blush is their license: you can use the illustrations in any way, including commercial products, and you can modify or combine it with other works (like I did, modifying the images and combining illustrations from various artists) however you like.

—

I think I’ve likely maximized my use of Blush between these two books; unless other collections get uploaded in the future. But if you need a handful of illustrations that you can customize, definitely check it out!

And if you have ideas for other cool illustration libraries that I could use for future books, please let me know! (Or if you’re an artist who would like to contribute to one of my future books. :) )

—

TLDR:

I have two new children’s books, and you can find “Cooper’s Crutches” and “Chloe’s Cookies” on Amazon in paperback and Kindle formats.

Illustrating Children's Books without being an illustrator, plus introducting two new children's books by Dana M. Lewis

Dealing With And Avoiding Chronic Disease Management Burnout

by Dana Lewis

I’ve been thinking about juggling lately, especially as this year I’ve had to add a series of new habits and behaviors and medications to manage not one but two new chronic diseases. Getting one new chronic disease is hard; getting another is hard; and the challenges aren’t necessarily linear or exponential, and they’re not necessarily obvious up front.

But sometimes the challenges do compound over time.

In January when I started taking pancreatic enzyme replacement therapy (PERT) for exocrine pancreatic insufficiency (EPI or PEI), I had to teach myself to remember to take enzymes at every meal. Not just some time around the meal, but 100% every time before (by only a few minutes) or right at the start of the meal. With PERT, the timing matters for efficacy. I have a fast/short feedback loop – if I mis-time my enzymes or don’t take them, I get varying symptoms within a few hours that then bother me for the rest of the day, overnight, and into the next morning. So I’m very incentivized to take the enzymes and time them effectively when I eat. However, as I started to travel (my first trip out of the country since the pandemic started), I was nervous about trying to adapt to travel and being out of my routine at home where I’ve placed enzymes in visible eye sight of every location where I might consume food. Thankfully, that all went well and I managed not to forget taking enzymes when I ate and all was well. But I know I’m still building the habit of taking enzymes and eating, and that involves both always having enzymes with me and remembering to get them out and take them. It sounds like a trivial amount of things to remember, but this is added on top of everything else I’m doing for managing my health and well-being.

This includes other “simple” things like taking my allergy medications – because I’m allergic to cats (and we have them!), trees, dust, etc. And vitamins (I’m vitamin D deficient when I don’t take vitamin D).

And brushing my teeth and flossing.

You do that too, right? Or maybe you’re one of those people who struggle to remember to floss. It’s normal.

The list of well-being management gets kind of long when you think about all the every day activities and habits you have to help you stay at your best possible health.

Eat healthy! (You do that, right? 😉 )

Hydrate!

Exercise!

Etc.

I’ve also got the background habits of 20 years of living with diabetes: keeping my pump sites on my body; refilling the reservoir and changing the pump site every few days; making sure the insulin doesn’t get too hot or cold; making sure my CGM data isn’t too noisy; changing my CGM sensor when needed; estimating ballpark carbs and entering them and/or temporary targets to indicate exercise into my open source AID; keeping my AID powered; keeping my pump powered; keeping my phone – which has my CGM visibility on it – powered and nearby. Ordering supplies – batteries and pump sites and reservoirs and CGM transmitters and CGM sensors and insulin and glucagon.

Some of these are daily or every few days tasks; others are once or twice a month or every three months.

Those stack up sometimes where I need to refill a reservoir and oops, get another bottle of insulin out of the fridge which reminds me to make a note to check on my shipment of insulin which hasn’t arrived yet. I also need to change my pump site and my CGM sensor is expiring at bedtime so I need to also go ahead and change it so the CGM warmup period will be done by the time I go to sleep. I want to refill my reservoir and change the pump site after dinner since the dinner insulin is more effective on the existing site; I think of this as I pull my enzymes out to swallow as I start eating. I’ll do the CGM insertion when I do my pump site change. But the CGM warmup period is then in the after-dinner timeframe so I then have to keep an eye on things manually because my AID can’t function without CGM data so 2 hours (or more) of warmup means extra manual diabetes attention. While I’m doing that, I also need to remember to take my allergy medication and vitamin D, plus remembering to take my new thyroid medication at bedtime.

Any given day, that set of overlapping scenarios may be totally fine, and I don’t think anything of them.

On other days, where I might be stressed or overwhelmed by something else – even if it’s not health-related – that can make the above scenario feel overwhelmingly difficult.

One of the strategies I discussed in a previous post relative to planning travel or busy periods like holidays is trying to separate tasks in advance (like pre-filling a reservoir), so the action tasks (inserting a pump site and hooking it up to a new reservoir) don’t take as long. That works well, if you know the busy period is coming.

But sometimes you don’t have awareness of a forthcoming busy period and life happens. Or it’s not necessarily busy, per se, but you start to get overwhelmed and stressed and that leaks over into the necessary care and feeding of medical stuff, like managing pump sites and reservoirs and sensors and medication.

You might start negotiating with yourself: “do I really need to change that pump site today? It can wait until tomorrow”. Or you might wait until your reservoir actually hits the ‘0’ level (which isn’t fully 0; there’s a few units plus or minus some bubbles left) to refill it. Or other things like that, whether it’s not entering carbs into your pump or AID or not bolusing. Depending on your system/setup, those things may not be a big deal. And for a day or two, they’re likely not a big deal overall.

But falling into the rut of these becoming the new normal is not optimal – that’s burnout, and I try to avoid getting there.

When I start to have some of those thought patterns and recognize that I have begun negotiating with myself, I try to voice how I’m feeling to myself and my spouse or family or friends. I tell them I’m starting to feel “crispy” (around the edges) – indicating I’m not fully burnt out, but I could get all the way to burnout if I don’t temporarily change some things. (Or permanently, but often for me temporary shifts are effective.)

One of the first things I do is think through what is the bare minimum necessary care I need to take. I go above and beyond and optimize a LOT of things to get above-target outcomes in most areas. While I like to do those things, they’re not necessary. So I think through the list of necessary things, like: keeping a working pump site on my body; keeping insulin in a reservoir attached to my pump; keeping my CGM sensor working; and keeping my AID powered and nearby.

That then leaves a pile of tasks to consider:

  1. Not doing at all for ___ period of time
  2. Not doing myself but asking someone else to do for ____ period of time

And then I either ask or accept the offers of help I get to do some of those things.

When I was in high school and college, I would have weekends where I would ask my parents to help. They would take on the task of carb counting (or estimating) so I didn’t have to. (They also did HEAPS of work for years while I was on their insurance to order and keep supplies in the house and wrangle with insurance so I didn’t have to – that was huge background help that I greatly appreciated.)

Nowadays, there are still things I can and do get other people to help with. Sometimes it’s listening to me vent (with a clear warning that I’m just venting and don’t need suggestions); my parents often still fill that role for me! Since I’m now married and no longer living alone, Scott offers a lot of support especially during those times. Sometimes he fills reservoirs for me, or more often will bring me supplies from the cabinet or fridge to wherever I’m sitting (or even in bed so I don’t have to get up to go change my site). Or he’ll help evaluate and determine that something can wait until a later time to do (e.g. change pump site at another time). Sometimes I get him to open boxes for me and we re-organize how my supplies are to make them easier to grab and go.

Those are diabetes-specific examples, but I’ve also written about how helpful additional help can be sometimes for EPI too, especially with weighing and estimating macronutrient counts so I can figure out my PERT dosing. Or making food once I’ve decided what I want to eat, again so I can separate deciding what to eat and what the counts/dosing is from the action tasks of preparing or cooking the food.

For celiac, one of the biggest changes that has helped was Scott asking family members to load the “Find Me Gluten Free” app on their phone. That way, if we were going out to eat or finding a takeout option, instead of everyone ALWAYS turning to me and saying “what are the gluten free options?”, they could occasionally also skim the app to see what some of the obvious choices were, so I wasn’t always having to drive the family decision making on where to eat.

If you don’t have a chronic illness (or multiple chronic illnesses), these might not sound like a big deal. If you do (even if you have a different set of chronic disease(s)), maybe you recognize some of this.

There are estimates that people with diabetes make hundreds of decisions and actions a day for managing living with diabetes. Multiply that times 20 years. Ditto for celiac, for identifying and preparing and guarding against cross-contamination of said gluten-free food – multiply that work every day times 14 years. And now a year’s worth of *every* time I consider eating anything to estimate (with reading nutrition labels or calculating combinations based on food labels or weighing and googling and estimating compared to other nutrition labels) how much enzymes to take and remembering to swallow the right number of pills at the optimal times. Plus the moral and financial weight of deciding how to balance efficacy with cost of these enzymes. Plus several months now of an additional life-critical medication.

It’s so much work.

It’s easy to get outright burnt out, and common to start to feel a little “crispy” around the edges at times.

If you find yourself in this position, know that it’s normal.

You’re doing a lot, and you’re doing a great job to keep yourself alive.

You can’t do 110% all the time, though, so it is ok to figure out what is the bare minimum and some days throughout the year, just do that, so you can go back to 110%-ing it (or 100%-ing) the other days.

With practice, you will increasingly be able to spot patterns of scenarios or times of the year when you typically get crispy, and maybe you can eventually figure out strategies to adapt in advance (see me over here pre-filling reservoirs ahead of Thanksgiving last week and planning when I’d change my pump site and planning exactly what I would eat for 3 days).

TLDR:

  • Living with chronic disease is hard. And the more diseases you have, the harder it can be.
  • If you live with or love someone with chronic disease(s), ask them if you can help. If they’re venting, ask if they want you to listen (valuable!) or to let you know if at any point they want help brainstorming or for you to provide suggestions (helpful *if* desired and requested).
  • If you’re the one living with chronic disease(s), consider asking for help, even with small things. Don’t let your own judgment (“I should be able to do this!”) get in your way of asking for help. Try it for a day or for a weekend.
Dealing with and avoiding chronic disease burnout by Dana M. Lewis

Modifying Thanksgiving and Other Holiday Meals With Exocrine Pancreatic Insufficiency (and Celiac)

by Dana Lewis

In the last few years, I’ve had the opportunity (or challenge) of re-thinking how I do holiday food traditions. For the last 13+ years I’ve figured out how to do everything gluten free (because I have celiac). I had that figured out pretty well. But more recently, when I was eliminating onion and garlic and trying low FODMAP last year, it was a lot harder. Instead of modifying what I usually did, I essentially started from a blank page in figuring out what I *could* eat and then what I wanted to eat.

Thankfully, this year I have many more options. Since I realized it was exocrine pancreatic insufficiency (EPI) that was causing my GI issues, I am back to being able to eat whatever (gluten free) that I want. It’s a lot easier. But it’s still different this year than years prior, because I need to generally estimate how many grams of fat and protein in what I am eating in order to determine how much pancreatic enzyme replacement therapy (PERT) that I need to take to “cover” the meal so I can digest it.

Usually at Thanksgiving, we do a family-style meal. (With a group of family that is COVID-boosted and everyone does a rapid test before they come.) We all help make food and set it out on a table, and people pass it around and serve themselves. In the past, I’ve had a few gluten free specific dishes that just sat in front of my plate, and I served from those and took other naturally GF options (like sweet potatoes, green beans, etc) as they were passed around.

This year, I wasn’t sure how I wanted to handle it. I’m still not great at guesstimating the amount of fat and protein in food the way I am with carb estimates (for which I have 20 years of practice!). I knew I would want to weigh some of the food to help estimate it (turkey, stuffing, etc that are likely to be higher fat and/or protein quantities) whereas others like sweet potatoes were something I generally have estimated well.

But would I bring my scale to the table and pick up my plate and weigh it with each portion I served? That seemed like it might draw attention to me and generally reduce the joy of the meal for me. I could fill my plate then go back to the kitchen with it and weigh it; but that also felt like it would steal some of my joy from the experience of sitting down and eating with everybody.

Instead, I decided that I would dish up my plate in the kitchen, where I could weigh things and then pop them onto my plate, then take my plate out and have it ready to go (all estimated and pre-decided with how much PERT I needed to take) when everyone else was ready to eat.

That also inspired some flexibility in the choices of what I was eating, too. Instead of cooking a small, separate gluten free turkey (from which there were usually too many leftovers), I decided instead to go with a pre-made meal that is turkey, mashed potatoes, gravy, and a side of green beans. “Pre-made” may sound gross, but there’s a brand that does mail-order ready-made gluten free meals that are refrigerated and you only have to microwave them. And I happen to really like their turkey dinner one. So this year I decided to get several of those turkey meals, so that my turkey, mashed potatoes, and gravy were already pre-portioned and I can happily use the nutrition counts on the package. That’s the majority of what I was stressing about measuring/estimating! So that takes out a) a lot of work of making a separate GF turkey and b) makes it easier because I already have counts for the biggest portions of my plate.

I will still make a box of gluten free stuffing, but that’s essentially only one thing for which I’ll need to use the scale to estimate the serving size and nutrition counts. Otherwise, I’ll microwave my turkey meal, put it on my nice plate, add my portion of stuffing, and be able to take it to the table and eat just like everyone else.

I’ve also worked to take the guesswork and stress out of dessert, too.

I realized a few years ago that no one was eating any of the GF desserts I brought, even when I would specially hand-make gluten free pumpkins pies. In part because no one wanted to “take” my food (even if I offered it to them); but there’s also a bias that GF stuff is less good (which is sometimes true) and there’s a gluten-y option so why not just eat that? But I realized that I miss the joy of being able to pick from 2-3 dessert options just like everyone else. So instead of making or bringing one big GF pie and having a slice and having way too many leftovers, I’d just as soon get a frozen miniature gluten free pumpkin pie. And last year, I decided to get *two* miniature pies – for options! Then I could be like everyone else and decide on a whim whether I felt like pumpkin pie or a different flavor of pie. So that’s what I’m doing this year, too. I got 3 miniature pies – pumpkin, lemon, and apple. Yum!

The other thing this thought exercise has brought is the realization that if I’m making/preparing/bringing all my own food, I don’t have to limit myself to just eating it on Thanksgiving. This way I’ll get to have more moderate portions multiple times, without feeling inclined to overeat at the main Thanksgiving meal – because my meal can be repeated multiple times throughout the week, complete with a selection of tasty GF pie options.

I spent part of last week stressed about figuring out what to eat, what the nutrition counts are, etc. But I’ve tried to turn this into an upside, which I think it actually is (given my situation of also having celiac/GF to contend with alongside figuring out EPI).

  • Tips for holidays for those of us with chronic illnesses

This also reminded me how helpful I find it to separate the stressful decision making (what am I going to eat) and the math (what are the counts; how many enzymes does this mean I need?) from the act of making and consuming the food. All together, those can feel stressful and overwhelming (especially if I’m already stressed and overwhelmed about anything else). Separating those actions takes the time pressure off.

If you’re dealing with food allergies or food limitations or needing to dose medication (like enzymes) for your food, this is one way that I deal with reducing stress: planning ahead as much as possible and having as much done in advance as possible.

I also do this for diabetes when possible, such as when I’m planning for a trip or a holiday week with lots of busy activities. I take some time in advance and set out needed supplies for a pump site change; I also pre-fill two or three reservoirs with insulin, so instead of having to do a reservoir AND change my site, I’ve done half the work and reduced the friction. With the reservoir set up ready to go and the pump site sitting on my bathroom counter, it makes it feel easier to change my pump site (even though it’s not that much more work, it feels like I’ve made the amount of time and hassle it takes a lot more doable).

  • Remember that you can ask for help

The final thing that I did to reduce stress was to ask for help. I told Scott (my husband) what I was stressing about. He asked how he could help, and mainly that was discussing my options and what I wanted to possibly eat and discussing the different options from bringing the scale to the table vs plating my food in the kitchen all the way to making different food (which I ultimately chose).

I also assigned him a task to help me do my nutrition estimates. One of the frozen GF individual-sized pies I bought is from an amazing GF bakery in Western Washington, but because they’re a small bakery their items don’t have nutrition counts. As he’s done in the past, I told him I want help a) weighing the pie and b) looking up GF apple pies to get a general ballpark nutrition estimate. We’d then use the weight of my actual pie to create an estimated count based off of similar GF apple pies with nutrition counts. It’s not perfect, but it’s better than my wild guessing.

And, having him help makes it feel more manageable overall, because I’m not doing it “all” by myself.

You don’t have to do it by yourself all the time. No, no one can swallow your enzyme pills for you, but the people in your life can help you look up nutrition information or find safe places for you to eat or find safe options that you can eat. Sometimes you need to ask for them to help, because people don’t always know that they can help. And be clear with them, whether you’re just venting and want a listening ear (valuable!) or whether you’re looking for brainstorming ideas and solutions for a particular thing – which can also be super helpful. But remember to ask. Don’t keep it all to yourself; you are loved and people want to help but they may not know how to help.

You’ll notice that the title of this blog post was about modifying things…but I didn’t modify my food choices at all in the sense of “reducing” my food as one might infer from traditional thinking about meal modifications. I’m not eating fewer grams of fat because I have exocrine pancreatic insufficiency. Medically, in general, it’s no longer recommended for people with EPI to consume lower fat diets than the general population. Instead, we dose enzymes to match the amount of fat (and protein and carbs) that we are eating. It’s similar to type 1 diabetes and insulin. Before insulin was discovered, people were on the starvation diet (to prolong dying); but once insulin was discovered we have been able to eat the same diet as other people, as long as we cover what we are eating with insulin. Individually, you may CHOOSE a different, specific diet approach that works for you; but medically, it’s not necessary to modify things in general based on EPI or type 1 diabetes. The biggest/primary modifications I make are to not eat gluten, because I have celiac disease. Otherwise, I estimate the carbs (to tell my open source automated insulin delivery system that I’m eating) and fat and protein (to calculate how many enzymes I should be taking for EPI) in what I’m eating and carry on, just like everyone else.

Modifying holiday meals with exocrine pancreatic insufficiency and a few tips for reducing stress at the holidays with chronic illnesses in general

Stigma and the impact on people with chronic illnesses

by Dana Lewis

I have a new thing, and I didn’t want to talk about it. In part, because of stigma. Mostly, because of stigma.

Stigma has played a huge role in how I have responded to my own chronic autoimmune diseases for almost 20 years, in fact. I’m incredibly disappointed that not much has changed in all this time.

When I was diagnosed with type 1 diabetes almost 20 years ago, I was very aware of the stigma against people with any type of diabetes. I grew up in Alabama. People with diabetes were perceived by society to be lazy, out of control of their own behaviors, and any complications or outcomes were their own fault.

It wasn’t – and isn’t – their fault. The tools and technologies (not much technology then) did not give people a chance at good or great outcomes. The tools and technologies failed people. Yet, people and their behaviors were and often still are blamed, shamed, and treated poorly in society and in medicine and the healthcare system.

The first day I was diagnosed and sent from my primary care doctor’s office to the pediatric endocrinologist, I was scared. Diabetes in society was presented to me as amputations and kidney disease and other not so great things. I didn’t know anyone with type 1 diabetes. And when the pediatric endo came into the room for the first time and said, “Don’t worry. We can get you an insulin pump, it’ll be great!” my reaction was: absolutely not. An insulin pump will be a visible label that I have diabetes. Instead of a chance of being blamed, shamed, and treated badly – I will almost certainly be labeled, blamed, shamed, and treated badly. No, thanks.

And so I didn’t get on a pump (at first). It wasn’t until I realized that a pump would give me freedom, to sleep in and not have to wake up and eat a pre-allotted amount and take insulin, that I decided the personal freedom was worth the labeling, dirty looks, blame, shame, and negative treatment.

And I regret it. I regret how stigma shaped my reaction to possible tools and technology that would aid me. I’ve strived ever since to not let that factor into my choices.

But last week, I realized stigma was still playing a role. I have a new thing, and I rationalized my choice not to blog about it because it’s a well-known thing, and as a newbie, surely I didn’t have anything to add to the public discourse about this thing. Information is available about this new thing, and I wouldn’t be adding anything new. What did I have to say that hasn’t been said before about this common topic?

But after a few days, I realized my decision to not blog about my experience was also driven by stigma and fear of how I’ll be treated when I share publicly that I have YetAnotherThing on my list of things I’m managing. It’s an autoimmune thing, again. It’s not “my fault”. It’s not at all in my control.

Because my immune system is too strong for my body to handle, I have not one, not two, but now three autoimmune things. (And 4 things total, but exocrine pancreatic insufficiency is possibly not an autoimmune thing so I leave it off the list even though it’s on my overall list of things I’m managing.)

Like people with physical or visible disabilities, having a chronic disease and talking about it publicly gives people the feeling that they can publicly shame and blame me “for my own good”. Or hypothesize on what I’ve “done wrong” to get to this point. Or to “suggest” things I can do to better manage. Often, these things are scientifically wrong. (Note: this is why ‘cinnamon’ is a joke for people with type 1 diabetes. There is no cure or treatment for type 1 diabetes other than taking insulin for the rest of our lives. Cinnamon does not cure diabetes, yet it and other things are presented to people with diabetes as “alternative” methods that would in fact, kill me if I relied upon those and stopped taking insulin.)

I dislike this. I dislike the fact that being open about what I’m dealing with, in order to possibly help other people also dealing with the same thing or identifying gaps in the healthcare system, invites judgment and all of this commentary. Let me be clear: I do not invite that. Ever. Not now, not in the future. Not about diabetes, not about celiac, not about exocrine pancreatic insufficiency, and not about my new thing. I’ve noticed more and more other advocates writing in their tweet threads or their blog posts “This is not soliciting advice or suggestions”, because so often we ARE bombarded with “advice” or “suggestions” that are unsolicited, and like I mentioned above, possibly dangerous if not outright deadly.

I don’t have answers. I can’t fix the stigma in society. The best I can do is perhaps write about it and talk about it and help shine a light on the fact that it 100% does impact people. It prevents other people from seeking healthcare when they need it. It prevents people from sharing and processing their feelings, or reaching out for help when they need it. It causes harm. And we all need to do better as a society.

So I am sighing a lot, and writing this blog post first so I can process my feelings that are blocking me from writing the next blog post. The one with scientific information and citations as well as an articulation of my experience and situation, in hopes that one day someone on page 18 of a search engine will find it when they need it. It’s not for everyone.

But as always, I think that if it eventually helps one person, then it’ll be worth it. It’ll be worth the stigmatizing response that some people will have now and in the future when they realize I am someone living with multiple autoimmune diseases. I hope. It’s always my hope. I’ve had this tagline on my email ever since I first had email, and I still believe it’s true today which is why I wrote this blog post and am now turning to writing the next one:

“Doing something for someone else is more important than anything you would do for yourself.”

Graves’ Disease, Subclinical Hyperthyroidism, and Everything I Have Learned About It (So Far)

by Dana Lewis

TLDR: I have newly diagnosed Graves’ Disease, I have associated eye stuff (called “Graves’ orbitopathy” or “Graves’ ophthalmopathy” or “thyroid eye disease”), subclinical hyperthyroidism, and a new learning curve. Below is what I’ve learned so far and what I’m still exploring.

As a person with type 1 diabetes (T1D) – which is an autoimmune disease – I am screened yearly for various high-risk related conditions. For example, celiac disease and thyroid issues, because those are fairly common in people with type 1 diabetes. I already have celiac disease (developed ~6 years after I developed T1D), but we have continued to screen every year in my annual blood work for thyroid markers, usually by screening T4 and TSH. Occasionally, T3 and/or TPO antibodies are also screened.

I remember vividly the chortle that my prior endocrinologist made after we diagnosed my celiac disease in college, probably in response to my comment about being frustrated of having “another” thing to deal with in addition to T1D. He chortled and said something like “once you have one (autoimmune thing), you’re likely to have two. Once you have two, you’ll be likely to have three.”

I didn’t like it at the time, and I don’t like it now. However, he’s not wrong. When your immune system has a little extra kick in it and you develop one autoimmune disease, the rates of having another autoimmune thing are increased. Thus, the typical yearly screening in T1D for celiac & thyroid.

I went 6 years between T1D and celiac, then almost 12-13 years to discover I now have exocrine pancreatic insufficiency (EPI). That’s not necessarily an autoimmune thing but may be a side effect of long-term T1D. Regardless, I was still thankful for the long period of time between T1D and celiac, then T1D+celiac and EPI. I was assuming that something else was coming eventually, but that I’d likely have a few years before the shoe dropped.

Nope.

I wasn’t terribly surprised when I scheduled my annual endocrinology appointment and did my annual blood work to find that one of my thyroid values was off. Specifically, my TSH (thyroid stimulating hormone) was low / below normal range. However, my T4 was smack dab in the middle of normal range. I got my blood work back Tuesday and waited for my virtual appointment on Friday to discuss in detail with my endocrinologist.

Since I’m me, I was curious about the interplay between normal thyroid levels (T4, and I suspected my T3 was likely still in range) but a low TSH value. What did that mean? General consensus seems to define this as “subclinical hyperthyroidism”. It’s not always treated, unless you are older (>65), have osteoporosis or heart disease, or TSH levels are <0.1.

I’m <65, don’t (as far as I know) have osteoporosis or heart disease, and my TSH levels are between 0.1 and 0.4, which is the low end of the normal range. So general treatment guidelines (see this example from the AAFP) suggest treatment isn’t necessarily warranted.

However…there’s more information that factors into the decision making. First, I had my last annual eye exam in October. All was well. Yet in November, I developed really gritty, dry eyes and went in for an appointment. I was diagnosed with dry eyes (gee, thanks!) and recommended to use gel drops at night before bed and regular eye drops during the day as needed. I did end up needing eye drops several times every day.

Then at the end of December or early January, we realized I had exocrine pancreatic insufficiency (EPI). I had been wondering if my dry eyes was related to the lack of digestion and absorption of nutrients, which also influences how my body uses the water content from food. It did seem to get a little better in the following months, because while I still needed the eye gel at night, I eventually moved to several days a week where I didn’t seem to need the eye drops during the day – yay!

However, in February and early March, I started to physically notice a shift in my resting overnight heart rate (HR). My Pebble 2+ HR watch and my Oura ring, both of which measure HR and heart rate variability (HRV), confirmed that both metrics were getting worse. I had a slowly increasing overnight HR and associated decrease in HRV. I am used to fluctuations, because the intensity of my ultrarunning can also influence HR the next day as a signal for whether my body has recovered yet or not. But instead of a day or two of increased numbers, I had an increasing trend line over several weeks, and it started to physically become bothersome. I actually raised the idea of getting my thyroid blood work done early this year, and was about to request the lab work, when after ~6 weeks or so the trend seemed to reverse and things (HR-wise) went back to “normal” for me.

Then I broke my toe in July and the same thing happened, but I chalked it up to sleep disruption from the pain and recovering from the fracture. My HR was continuing to rise even as the pain subsided and my toe was clearly healing. And looking back at my HR data, I can see it actually started to rise at the beginning of July, about two weeks before I broke my toe, so it’s not solely influenced by my broken toe.

As a result of these HR increases (that are noticeable and bothersome because I’m also not sleeping well at night and I physically feel the higher HR during the day), and the ongoing dry/gritty eyes, I suspected that the cause of my “subclinical hyperthyroidism” was Graves’ disease.

I’ve seen estimates that ~30% of people with Graves’ disease have what is called “Graves’ orbitopathy” (and other estimates suggest 20-50%, like this one), so the combination of my ongoing eye symptoms and the low TSH suggested that further lab work assessing various thyroid antibody levels would be able to confirm whether Graves’ disease was the likely source of the subclinical hyperthyroidism.

Therefore, I wasn’t surprised during my virtual visit that my endocrinologist ordered additional labs (repeat of T4 and TSH; adding in T3, TPO antibodies, and TSI (Thyroid Stimulating Immunoglobulin), Thyrotropin Receptor Ab, and Thyroglobulin Ab). Treatment plan, if any, would be based on these results.

I managed to get in that (Friday) afternoon for the repeat lab work, and my results started trickling in by the time I woke up Saturday morning. First, T3, T4, TPO, and TSH came back. T4 was still normal; as I expected, T3 was also normal. TPO antibodies were high, as expected, TSH was still low, as I expected. Saturday night, Thyroglobulin Ab came back high, as expected. Monday, TSI came back high, as expected. Tuesday, my last test result of Thyrotropin Receptor Ab came back, also high as expected.

The summary was: all antibodies high; TSH low; T3/T4 normal.

My endocrinologist messages me Tuesday afternoon confirming mild Graves’ disease with subclinical hyperthyroidism.

The challenge is that I have normal T3/T4 levels. If those were high, we’d treat based on those levels and use those levels coming back into normal range and any change in antibody levels to assess that things were going well.

But the guidelines for subclinical hyperthyroidism don’t really indicate treatment (except on an individual level based on age, other conditions, or undetectable TSH <0.1, as I mentioned).

However, from what I’ve read, the “eye stuff” seems to be driven not by thyroid levels but by the presence of the increased thyroid antibodies. Treatment would possibly bring down the thyroid antibody levels, which might help with the eye disease progression. But not a guarantee. So my doctor left it up to me to decide whether to treat it or not.

Given the ongoing presence of active eye disease (I haven’t been able to wear my contacts for two weeks right now due to swelling/pain in the eyes, plus itching and redness), and the bothersome heart rate feeling, I have decided to try antithyroid medication. I’ll be on a relatively low dose of an “antithyroid” drug, again with the goal of trying to reduce my antibody levels.

This is why I ended up deciding to write this blog post after all: I have not been able to find any clear treatment guidelines for subclinical hyperthyroidism and Graves’ disease with active eye symptoms (from Graves’ orbitopathy). The literature does suggest that treatment to reduce thyroid antibodies even with in-range T3 and T4, targeting a return to normal TSH levels, may be helpful in reducing Graves’ orbitopathy symptoms. This isn’t well known/established enough to have been documented in treatment guidelines, but does seem to occur in many people who are treated.

So hopefully, anyone else with low TSH and high antibodies suggesting Graves’ disease but normal T3 and T4 levels that suggests subclinical hyperthyroidism and also has other symptoms (whether that’s heart rate or other common hyperthyroid symptoms like increased sweating, shaking, heart palpitations, heat intolerance, sleep disturbances) that are bothersome, now have an example of what I chose, given my situation as described above.

I also thought sharing my question list at different stages for my endocrinologist would be helpful. After I saw that I had low TSH and in range T4, and suspected this meant I had subclinical hyperthyroidism from Graves’ disease, given my eye symptoms, the questions I asked my endocrinologist were:

  • What additional lab work did we need to confirm subclinical hyperthyroidism and Graves’ disease as the cause? What additional information or lab work would give us a treatment plan?As expected, he repeated TSH and T4, added T3 and TPO and the other antibody tests described above: TGAb, TRab, TSI. This would confirm subclinical hyperthyroidism and Graves’ as the likely source.

     

  • Do I need treatment, since the guidelines generally don’t suggest treatment with normal T3/T4 and TSH between .1 and .4?Initially he suggested treatment would be an option, and after the repeat and expanded lab work, left it up to my decision. Given my symptoms that are actively bothering me, I’m choosing to try low-dose antithyroid medication.
  • For hyperthyroidism treatment, beta blockers seem to be part of treatment guidelines for managing symptoms in the short-term, since it takes ~6 weeks for antithyroid medication to show up in lab results. Were beta blockers warranted in my case?My endo typically doesn’t like to prescribe beta blockers unless there are extreme symptoms. He gave an example of someone with a T4 (I think) around 10 and extreme visible shaking. He left it up to me, but his opinion was the side effects, such as lethargy, would outweigh the benefits for mild symptoms, so it is better to treat the root cause. I agreed and did not ask for a beta blocker prescription.
  • I also asked if a DEXA scan was warranted to check my bone density.I haven’t had one in over a decade, and celiac and EPI and now Graves’ puts me at possible higher risk of bone density issues. And, since the presence of osteoporosis changes the treatment recommendation for subclinical hyperthyroidism, we agreed it was worth doing. I have it scheduled in a few weeks. My last one over a decade ago was normal.
  • Finally, I asked about my eye care, now that I have a known eye thing (Graves’ orbitopathy). Do I need to get referred to an ophthalmologist, or can I continue to see my existing optometrist for annual eye care (including diabetes eye exam) and contact fittings?My endocrinologist suggested that my optometrist can continue to manage my eye care, unless something changes significantly. Ophthalmologists, based on his response and my research, seem to handle severe eye disease treatments that aren’t likely warranted for me. I’ll probably need supportive eye care (e.g. gel drops, regular eye drops) for now. However, I’m planning to send a note to my eye doctor and flag that I want to talk about Graves’ eye things and a plan for monitoring severity and progression over time, and check whether she’s comfortable supporting me or if she prefers to refer me to someone else. 


After my repeat labs came back, my endocrinologist messaged me to confirm things and ask if I wanted him to send in the prescription as previously discussed. This exchanged answered the additional questions I had at this time:

  • What is the treatment timeline? How soon might I see results?He suggested repeat labs at the 2 month mark. Ideally, we’d see reduced antibody levels and my hope is that my eye symptoms will have also improved and/or I won’t have any additional weeks without being able to wear contacts.

    Given I have a clear impact to my heart rate, I’m hypothesizing that I might see changes to the trend in my heart rate data sooner than 6 weeks – 2 months, so that’ll be interesting to track!

     

  • Side effects?Common side effects with antithyroid drugs are rash/allergic type response, headache, or agranulocytosis. He told me to discontinue and contact the office if I had any of those symptoms.

    He didn’t go into detail, but I’ve read about agranulocytosis and it seems like if you have a fever and strong sore throat, you need to discontinue and probably will have blood work ordered to make sure your white blood cell counts are ok. Don’t google too much on this one as it sounds scary, but it’s also rare – less than 2% of people seem to have this.

     

  • The only question he didn’t answer was whether it makes a difference in efficacy to take the antithyroid drugs at night or in the morning.Probably, the answer is it doesn’t matter, and whatever time you can take it consistently is best. However, I want to optimize and get the best results from taking this, so I’m bummed that there doesn’t seem to be any evidence (let me know if you’ve found anything in medical literature) suggesting how to optimize timing of it. 

So that’s where I am today.

I now have type 1 diabetes, celiac disease, exocrine pancreatic insufficiency, and Graves’ disease (contributing to subclinical hyperthyroidism). It’s possible that we can fix the subclinical hyperthyroidism, and that I won’t need to be on antithyroid medication long-term. However, the data for those of us with Graves’ orbitopathy isn’t super optimistic compared to those without Graves’ eye disease; so I am managing my expectations that managing my thyroid antibody and hormone levels will be an ongoing thing that I get to do along with managing insulin and blood sugars and managing pancreatic enzymes. We’ll see!

The multivariable equation that is running with type 1 diabetes, celiac disease, and exocrine pancreatic insufficiency

by Dana Lewis

I’ve written in the past about running with type 1 diabetes. I’ve tried running fasted, which works well in one sense because I have no extra insulin on board. I’ve modified my strategy further to run 2 or more hours after breakfast, so I have fuel but don’t have (much) IOB. But as I’ve extended my forays deeper into longer distance ultrarunning, and as I learned I have exocrine pancreatic insufficiency (EPI), running is getting a little more complicated.

For past thoughts on T1D running, here’s my post on running fasted and thinking about IOB. I also wrote more here last year about marathon and 50k ultramarathon training and how I use small doses of carbs to “correct” for dipping blood sugars. Last year, my body didn’t seem to need or want much additional fuel, so I didn’t force it. Part of that was likely a symptom of my undiscovered EPI. Now, however, that I am taking enzymes for pancreatic enzyme replacement therapy so I can digest what I eat, I have more energy (because my body is actually using what I eat), but I also get hungry and seem to need more fuel while running. But everything I eat needs enzymes to help me digest it, even things that I eat while ultrarunning.

So…it’s complicated to run with type 1 diabetes and micromanage insulin and carbs to manage blood glucose levels; and I’m limited in my fuel choices because I have celiac disease; and now I have to also carry, titrate, and dose enzymes for any fuel that I eat on the run as well.

Oh, and like insulin, the timing of enzymes matters. But there are no studies on enzyme digestion and how that changes during exercise, let along endurance activities like ultrarunning. So I am running in the dark, so to speak, trying to figure out things myself as I go along.

Here is more detail about what I’m doing and why I’m constantly running multivariable equations in my head while training for a 50k, 50 mile, and maybe even 100 mile run later this year:

First and foremost, managing blood sugar levels comes first.

I wear a CGM, so I can see how my blood sugar (BG) is changing during the run. I have a pump, so I can make any changes to insulin dosing. I also have an open source AID system (OpenAPS), so before running I set a higher target which tells the system not to give me as much insulin as it would otherwise. (It also does an awesome job with post-run insulin sensitivity changes! But that’s another post.) As I’ve previously written about, reducing insulin on board (IOB) when I know I’ll be running is the important first step, so I don’t have to start taking carbs and treating a low at the start of my run. Usually, my open source AID and I (by giving it a temporary target) do a good job getting me to my run start without much IOB, and ideally somewhere around 120-130 mg/dL.

From that level area, I can see rises and dips in BGs and dose accordingly. I carry easily dissolving small mint-like candies that are a few carbs (3-4g), or Airhead minis (8g of carbs), and with any dip below 120 or recurring drop that’s not coming up after 15 minutes since my last carb, I take more. These are pretty much straight sugar, and my body seems to do ok with absorbing carbs without enzymes, as long as there is no fat or protein involved.

However, with ultrarunning it’s generally considered to be ideal to proactively be consuming fuel to balance out the energy that you’re burning. Again, this is where I’m less experienced because for the last years, my body never wanted fuel and I did ok. However, now I seem to need fuel, so I’m working on figuring this out because food typically has some fat and protein, and I have to dose enzymes for it.

I carry a baggy with some single-enzyme (lipase) pills and some multi-enzyme (lipase for fat, amylase for carbs, and protease for protein) pills. I carry carefully measured single-serving snacks that I know the fat and protein quantity of. For each snack, I might need 1-2 enzyme pills of various sorts.

Timing matters: I can’t take enzymes and then snack slowly for 30 minutes. To eat slowly, I would need to take enzymes every 10-15 minutes to match the speed of eating so it will ultimately be there to help the food digest.

But, more carbs/food at once has an effect on how I feel while running and also to my BGs. I’ve tried to find things I love to eat running and can eat within 5 minutes – even while running 30 seconds and walking 60 seconds repeatedly – that are also less than 1-2 enzyme pills worth of fat and protein and aren’t too many carbs at once. These may be 15-20g carb snacks which means a bigger impact to my BG levels, and I may need to even do a small bolus (give insulin) for what I am eating. The challenge again is that food can hit BGs in about 15 minutes but it takes ~45 minutes for insulin activity to peak. And, during exercise, I’m more sensitive to insulin than I normally am. There’s no magical calculation to know how much “more” sensitive I am in the midst of a run, so I have to guess and thread the needle between not giving too much insulin that would cause a low BG but giving enough so I don’t spike above 180 mg/dL, which is what makes me feel icky while running.

Preferably, and very personally, I’d like to float up and down between 120-140 mg/dL or 130-150 mg/dL, which is higher than BGs usually hang out for me without exercise (remember: open source AID!), but is high enough that I have buffer against a low, so if I suddenly dip and I haven’t looked at my BGs in 15 minutes, I can usually still carb up and prevent an annoying low. (Lows matter even more on runs because they slow me down physically, which is usually not what I’m going for.)

It doesn’t always work that way. Sometimes I undershoot the insulin because I’ve miscalculated my effort running, and my BG drifts high and I have to decide whether or not to correct further. Other times, I overshoot (or have increased my run effort and didn’t take that into consideration) and cause BG to dip or dive toward low. Then I have to carb up but hopefully not so much that I cause a high.

My priority list therefore is: manage BGs, take in fuel, try not to over or undershoot on insulin for the fuel or overshoot carb corrections for drifting BGs, plus remember to take enzymes for the fuel and dose the right amount, plus stay on top of my electrolytes. Oh, and keep run-walking.

And along the way, I am also trying to document and learn whether the absorption of enzymes changes during different intensities or lengths of exercise; whether these over the counter enzymes are reliably measured enough for small snacks, and whether my personal ratios for fat and protein are any different during exercise the way my sensitivity to insulin changes during exercise.

It’s a lot of work. Plus, the pre-work that goes in to finding, measuring, and preparing foods that I think I want to eat during the run!

My current short list of single-serving snacks that I can tolerate while doing long runs includes: 8 gluten free peanut butter pretzel nuggets; 1 serving of chili cheese Fritos; 6 gluten free yogurt covered pretzels; and 1 gluten free stroopwaffle. Each of those is 15-20g of carb, 1-2 enzyme pills, and some of them have a bit of sodium. (I’m also fairly sensitive to sodium so I take electrolyte pills every 30-45 minutes while racing, but I’ve realized the extra fueling with a bit of sodium makes it so I don’t have to take the electrolyte pills every 30 minutes like I used to.)

When I build up to my longer (50 mile or maybe 100 mile ultras, if I get there!) runs, I’m also going to need additional “real food” options, as I doubt I will be able to or want to eat stroopwaffle and Fritos for as long as the run will take. This is just a theoretical list, but it includes tomato soup (sodium and warm liquid!), instant mashed potatoes (soft and not much chewing involved), grits and oatmeal (not together, but same reason as mashed potatoes). These all luckily also happen to be lower in fat and protein, which means easier to digest (in theory), and I am less likely to have better error margins against getting the enzyme dosing wrong given the small amounts of fat and protein.

What it comes down to is that running with type 1 diabetes is a giant constant personal science experiment. Celiac makes it more work, but also removes some of the variables by limiting what I can to eat: as at races I can’t eat out of any open bowl or package due to cross contamination concerns, and reading packages takes time, so it’s way safer to just eat what I bring myself. Having EPI on top of that means mastering the art of digesting food with pancreatic enzyme replacement therapy, which is its own special form of science experiment.

There’s a lot of variables, a lot of science, and a lot of learning going on every time I go for a run. Doesn’t it sound fun?!

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(PS – If you’re someone with EPI who has some experience with endurance activity and changes to dosing enzymes..or find that it doesn’t change anything…please reach out! I’d love to chat and take my knowledge base from n=1 to n=2!)

Multivariable Equations: Running with Type 1 diabetes, celiac disease, and Exocrine Pancreatic Insufficiency