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

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

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!

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

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

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

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

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)

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

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)

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

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?!


(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

Peer pressure during and “after” the COVID-19 pandemic, why it’s similar to living with celiac disease or food allergies, and a reminder that we usually have choices

Imagine that you are invited to go out to eat with a group of friends, or with colleagues at a conference.

Your mind races.

You start to think through the venue and if it’s safe for you to go. What the experience will be like at the venue. What the short-term risks are over the next few days. What the long-term risks are for you and your health, because what you choose to do will potentially influence your health for years to come.

Maybe you shouldn’t, or don’t want to go.

Given the venue, you realize that you can make choices for yourself to make it safer for you, regardless of what anyone else does. You can choose to go, but you can also do things differently than everyone else. But there’s a cost. There’s a short term cost of being the “different” one at the table.

So what do you choose? Do you cave to social pressure, and “just do what everyone else is doing”, because you think the risk of short term costs isn’t a big deal, and you don’t worry about the long-term costs to your health? Or do you decide to do something different, either not going, or doing something different at the venue than everyone else? Or do you decide to suggest an alternative?

For those of us who are reading this in 2022 or beyond, we may read the above scenario and think primarily about COVID-19 risk factors and mitigations.

But for those of us living with celiac disease (or food allergies or other significant dietary restrictions), the above scenario is one we lived with even prior to 2019 and COVID.

Here’s how this scenario could read specifically for COVID-19, with COVID-specifics bolded:

Imagine that you are invited to go out to eat with a group of friends, or with colleagues at a conference.

Your mind races.

You start to think through the venue and if it’s safe for you to go. What will the experience be like at the venue: Is it indoor or outdoor? What is the ventilation like? Is everyone in your group vaccinated and boosted? What the short-term risks are over the next few days: If you get COVID-19, how will that impact your schedule/life/childcare etc? How at risk are you for hospitalization with COVID-19? What the long-term risks are for you and your health, because what you choose to do will potentially influence your health for years to come: Are you concerned about “long COVID” or associated conditions? What are the risks that a COVID infection would make your personal health situation worse?

Maybe you shouldn’t, or don’t want to go.

Given the venue, you realize that you can make choices for yourself to make it safer for you, regardless of what anyone else does. You can choose to go, but you can also do things differently than everyone else. But there’s a cost. There’s a short term cost of being the “different” one at the table. You could go, but wear an N95 mask and only take off your mask to quickly eat or drink. Or you could go and mask, but not eat. Or you could bring a CO2 meter to evaluate the ventilation, and use that to decide.

So what do you choose? Do you cave to social pressure, and “just do what everyone else is doing”, because you think the risk of short term costs isn’t a big deal, and you don’t worry about the long-term costs to your health? Or do you decide to do something different, either not going, or doing something different (e.g. N95 masking, and/or not eating) at the venue than everyone else? Or do you decide to suggest an alternative, such as picking an outdoor venue instead of indoors, or choosing an activity that doesn’t involve close proximity and eating or drinking, such as a walk?

Now consider how this scenario could read specifically for someone with celiac disease (or food allergies or food restrictions), with those specifics bolded (in a pre-pandemic life):

Imagine that you are invited to go out to eat with a group of friends, or with colleagues at a conference.

Your mind races.

You start to think through the venue and if it’s safe for you to go. What will the experience be like at the venue: Do they have a gluten free menu? Do they indicate that they have cross-contamination practices in place for making the food gluten free? Does the menu even have food that is worth eating? What the short-term risks are over the next few days: If you get glutened and are someone who is symptomatic, how will the minutes, hours, and days following of not feeling well influence your schedule/life/childcare etc? What will you not be able to do because you won’t feel well enough? What the long-term risks are for you and your health, because what you choose to do will potentially influence your health for years to come: Some people with celiac disease aren’t symptomatic, but are causing damage even if they don’t feel it in the minutes/hours/days following. Eating gluten causes the immune system to attack the body, increasing the risk for cancer and other complications.

Maybe you shouldn’t, or don’t want to go.

Given the venue, you realize that you can make choices for yourself to make it safer for you, regardless of what anyone else does. You can choose to go, but you can also do things differently than everyone else. But there’s a cost. There’s a short term cost of being the “different” one at the table. You could go, but not eat if there’s not food worth eating or if you determine (in advance or at the restaurant) that they doesn’t have safe practices for preventing cross-contamination. You could go, but bring your own food and do your own thing.

So what do you choose? Do you cave to social pressure, and “just do what everyone else is doing”, because you think the risk of short term costs isn’t a big deal, and you don’t worry about the long-term costs to your health? Or do you decide to do something different, either not going, or doing something different (e.g. not eating, or bringing your own food) at the venue than everyone else? Or do you decide to suggest an alternative, such as recommending a different venue that has safer gluten free options, or choosing an activity that doesn’t involve eating, such as a walk?

In both a COVID-19 scenario and a scenario for someone with food allergies, food restrictions, or celiac disease, my point is that you have choices. While other people’s choices can affect you, your choices are the ones that matter most.

With celiac disease, which I’ve had for more than 13 years, I’ve personally chosen many times to not eat at places that weren’t safe for me.

I would eat a meal or snack before I go or while I’m there, or I bring food from elsewhere. Sometimes I’ve felt really awkward, but it was safer and the right choice for me to make. Sometimes it’s because I couldn’t change the venue, and the venue’s safe food was dry lettuce and dry chicken, and it just wasn’t worth eating. (Ever turned your nose up at airplane food? Same idea.) Sometimes I would bring my own food, and it’s gotten a lot easier to use a delivery service to get food from a safer (and often tastier) place. Or sometimes I couldn’t change the venue and there were supposedly safe options, but then the waiter did something that indicated it was likely not safe for me (e.g. saying “oh, just take the bread off your plate, no big deal”). That’s pretty much an automatic “do not eat here, it’s not safe” red flag being waved in my face.

It’s not fun to not get to eat or not get to do what everyone else around you is doing. I get it. Trust me, I do.

But do you know what is even LESS fun than feeling awkward? Getting glutened. Within minutes, feeling your chest tighten and getting abdominal cramps (that are like getting a “stitch in your side”, but all the way across your abdomen, and unrelenting for 30 minutes) that make you think you should go to the ER. Days of fatigue, brain fog and sore abdominal muscles. Knowing that you’ve increased the chances of tears in your small intestines and increased the risk of various types of cancers. All because of a speck of a crumb that found its way into your food.

So I make awkward choices. Sometimes I face teasing, and occasionally outright bullying, although thankfully that has been rare. And I’ve survived these choices.

I’ve gotten better over time, researching venues and making recommendations about safe places for me to eat. 99% of the time, people have zero problem going to the places I recommend. They want me to be safe and happy, they don’t really care what they eat, they’d rather have my (happy) company than to go someplace without me. (And if your  friends/colleagues/family members don’t care that much about you…maybe this will give you some food for thought.) I can’t always find safe GF options, so I also plan ahead and pack tasty snacks or food options, eat in advance, or plan to eat afterward.

And when that’s not possible, I make the choice to do the “awkward” but safe thing for me.

So in a COVID-19 or similar pandemic, I want you to know that you have choices. I’ve read a few stories from folks online who have shared regrets that they felt “peer pressure” to go eat at a conference, inside, because that’s what their friends or colleagues were doing. And they got COVID-19. Which doesn’t sound fun in the short run (being sick, getting stuck in foreign countries or strange cities, having to disrupt the lives of everyone around you, struggling to not infect your loved ones, being stuck without child care), nor the long run (risks of long COVID, or risks of additional conditions that can occur following COVID).

If you need ideas, here are some you can consider:

  • Pick an outside venue.
  • Get takeout food and go eat outside somewhere.
  • If you are inside, ensure good ventilation (sit by windows, open the windows). If you’re unsure the ventilation is good enough, you can bring a CO2 meter* to measure just how stale the air is. If you have a choice, sit somewhere quieter and further away from others, so you don’t have to yell in each other’s faces to be heard.
  • If the ventilation isn’t great, or you’re in a loud and/or crowded venue talking face to face with people who haven’t recently tested, you might want to stay masked except for when you are eating or drinking. Then put your mask back on. Limit the time you are exposed to the indoor air that everyone else’s been breathing.
  • If you are inside a poorly ventilated, loud, and/or crowded space, or otherwise consider the risks to be too high for your comfort, you can leave your N95 mask on the whole time – you don’t have to eat just because everyone else is eating unmasked!

I get it. It’s hard, it’s awkward, and peer pressure is real. But you do have choices you can make, and it gets easier when you think about your choices in advance and mitigate or decide how you’ll handle such a situation.

I hope this has given you food for thought about what choices you could make if you’re worried about such situations, and know that there are many others out there making similar choices, whether it’s because of COVID-19 or because of things like celiac disease, food allergies, or other dietary restrictions for health reasons.


Note: this is the CO2 monitor we bought (amazon affiliate link). It’s pricey, but we’ve definitely put it to use on planes and at meetings and feel like it is a worthwhile tool.