Author: Dana Lewis

What you should know about starting on Pancreatic Enzyme Replacement Therapy (PERT)

by Dana Lewis

It’s been about two weeks since I started on pancreatic enzyme replacement therapy (PERT) and it’s been really interesting to experience the difference it is making for me.

For context (and you can read more here), I have moderate exocrine pancreatic insufficiency (EPI or PEI), but I have very obvious symptoms following anything I eat for a few hours, as well as next-day bathroom habits. My clinician didn’t think trying PERT would be a problem even though my elastase levels were only borderline low, and it didn’t hurt. It definitely helped in multiple ways.

Here’s what the experience has been like starting on PERT, what I like about it, what I found challenging, what it’s like to scientifically titrate your dosing of PERT, and a handful of random other thoughts.

Here is what I like about Pancreatic Enzyme Replacement Therapy (PERT)

With undiagnosed EPI, for the last almost two years, I would eat food with dread. And not a lot of food (averaging 2 meals a day), because I had to severely limit the kinds of things I was eating to try to reduce my symptoms (with mixed success). With my first few doses of PERT, I ate relatively small, careful and low-FODMAP meals so I could better assess whether PERT was working.

And wow, was it working.

With the first few small (and low-FODMAP, to reduce variables that I was testing) meals, I had an immediate improvement. I didn’t realize until I took PERT how sick I felt every time I ate anything, even when I didn’t have obvious post-meal symptoms of gas, stabbing abdominal pain, or next-day bathroom habits. With PERT, I felt…nothing? Which is apparently how I used to feel after I would eat. There was no sick feeling, no bloating within an hour, and no discomfort for hours. There was no gas after I ate or overnight. In the morning, I didn’t have steatorrhea.

I got braver and experimented with a few bigger meals. In some cases, I still felt not-sick after I ate, but did develop some gas. However, it was significantly reduced.

From tracking the cumulative fat and protein levels in everything I ate, I was able to see that things less than 50 grams of fat and protein (combined) worked exceptionally well with the level of PERT I had started on. PERT has different dosing options, and I had started on a relatively moderate dose. I saw that some of my 70-ish gram meals were fine, but the ones in the 90s definitely needed more PERT.

Even when I could tell I needed more PERT, though, it wasn’t a complete failure. Even for meals with 90+ grams of fat+protein, I had a reduction in feeling sick, way less gas, and improved bathroom habits, even if they weren’t as ideal as what happened when I ate <50g of fat and protein meals.

As I discussed in my previous post, I had felt like a boiling frog where I didn’t really feel good every day, but there was usually nothing obviously wrong (no broken bone, no stabbing pain every day). So it was hard to know what was wrong. Now, taking PERT, I can see a clear difference on the days when the dosing is well-titrated to what I’m eating (no symptoms after I eat, plus I feel a lot better!) compared to when the dosing isn’t optimal (reduced symptoms but still there, sometimes will still feel sick or abdominal discomfort).

I also now have back the lab results of the bloodwork I asked my gastroenterologist to run on fat-soluble vitamins (A, D, E) and iron, to make sure I didn’t have any deficiencies that need addressing. Thankfully, I didn’t – which is probably influenced by the fact that I am absorbing some of what I eat without PERT, but is also likely due to the fact that I take two multivitamins daily plus additional vitamin D supplements. I can imagine that I would have much lower levels without the supplementation, so I’m glad I had built the habit in the last two years of making sure I was taking my vitamins. (Which I wasn’t doing before two years ago consistently, and intuitively was worried about getting the right nutrients given the changes I was making to what I was eating, so that was a good habit to have built up!)

As a pleasant result of taking PERT, I’m also seeing improvements in symptoms that I did not think were correlated with EPI.

For example, in October I developed severely dry eyes, which I’ve never had before. I’ve been using lubricating eye drops several times a day and gel drops at night ever since. After about a week of PERT, I realized that I was waking up in the morning and my first thought wasn’t about putting drops in my eyes because they weren’t painfully dry. And then on days following when my PERT dosing wasn’t optimal (as evidenced by post-meal gas or abdominal discomfort, etc), my eyes are more dry than they are on the other days.

Another thing I’ve noticed is the skin on my face improving. In the last year, I started having more acne breakouts and changes to my skin tone. This, like the eye dryness, has started to noticeably improve in the last week or so (with no other changes to routine or the weather: it’s still winter here!).

What I find challenging about Pancreatic Enzyme Replacement Therapy (PERT)

There’s not a lot of guidance to patients regarding PERT titration (changing dosing levels as needed). My GI doc wrote a script for one size and said we could size up if it wasn’t working. That was it.

Thankfully, I have 19 years of experience with titrating insulin dosing for everything I’m eating, and I have an inclination to use spreadsheets to track things, so I began to take PERT and write down the relevant details of what I was eating (date, timing, what it was, how much fat and protein it had, what PERT dose I took), the result (any post-meal symptoms including timing) and whether it caused steatorrhea or other bathroom-related changes. From this, I was able to very quickly group meals into “wow that worked awesome”, “hmm, this reduced symptoms but it wasn’t perfect”, and “wow that needed more PERT”. For me, those roughly ended up being <50 grams combined of fat and protein (“wow that worked awesome”), around 70 grams (“hmm, this reduced symptoms but it wasn’t perfect on every front”), and more than 90 grams (“wow that needed more PERT”).

Interestingly, a lot of the medical literature I read about PERT indicates that most people are not taking enough. Given my analysis of my own data, that’s currently true. (Personally I’m currently trying to collect more data in each category before I discuss dosing with my clinician, to figure out what dosing or prescription I might need).

I’m only two weeks in, so I can’t yet give solid advice to anyone else taking PERT, but I imagine in the future I would likely feel more confident saying the following to someone else starting on PERT:

  • If you can, write down the date, timing, what you eat, and the nutrients (e.g. fat, protein, and carb) of what you’re eating, and track what symptoms you have when following a meal. Also make sure to note how many and what dose of PERT you took.
  • See if you can group the data between which meals turned out well, which could be improved, and what didn’t work. That may help you discuss with your doctor what level of enzyme you need for what type of meal.

Anecdotally in the EPI communities, people discuss taking 3-4 of the largest dose PERT for meals, vs 1-2 for their snacks. It seems to be very, very individual about what people need. Some people (like me with moderate EPI) have symptoms, others can have severe insufficiency (severe EPI) but have fewer symptoms. As a result, we may need more or less PERT, depending on how our bodies are generating symptoms.

One frustration I have about GI-related conditions, whether that’s those that result in people using the low FODMAP diet or EPI resulting in the need for PERT – and even in the diabetes community where insulin is needed – is that there’s very much a perception of individual blame in the day-to-day operations. If you have symptoms, you probably did something wrong. You ate a high FODMAP thing, or you ‘stacked’ FODMAPs…or for EPI, you didn’t take enough PERT or you ate the wrong thing. In diabetes, you didn’t take enough insulin, or you did it at the wrong time, or you forgot, or you ate too much, or you ate the wrong thing…. There is SO much blame and shame going around, and it’s frustrating to see (and experience).

Having tracked my data for two weeks now, I can see very clear cause and effect in the data: when I feel great, my PERT dosing has been well-matched to what I was eating. When I have some symptoms, the PERT dosing was not-optimal, and sometimes as a result I have a lot of symptoms and don’t feel well. It’s a very clear cause and effect relationship between having sufficient enzymes or not having enough enzymes. I am working to not feel guilty, e.g. I did something ‘wrong’ by choosing the wrong sized meal to go with the PERT dosing, and instead frame it as data that I’m collecting to inform the future prescription I need of PERT.

(My point here is that I don’t like the blame/shame that goes around, and yet, I still feel it, too. I’m trying to remove myself from those patterns of thinking, because it’s not at all helpful.)

It’s helpful instead for me to think “Wow, that was not enough PERT this time! Next time I should take 2 of this dose, or supplement my single PERT with standalone lipase” rather than feel shame or guilt because I ate a “big” meal. This is in part why I’m trying to stay away from thinking and using words like “big” or “small” meal, because the size is so arbitrary, depending on whether you’re looking at volume of food on a plate, thinking about calories, carbohydrates (to take insulin for it), or the fat and protein amounts (to dose PERT for it).

Also, everyone with EPI is likely VERY different from one another, and so my cutoffs of 70 or 90g of fat+protein may be numerically more or less than what someone else needs. (Those who take PERT will also notice I am very careful to not specify what PERT dose my one pill is, because everyone’s needs are different, and I don’t want anyone to accidentally anchor on my dose numbers, because what I need may not be what everyone else needs.)

And I can imagine some folks without EPI reading this with their own perceptions of fat and protein levels thinking judgmental thoughts about the numerical amounts of what I’m eating at different times.

Having to track fat and protein makes me grumpy, for a few reasons. In part, because it’s “one more thing” to track (in addition to general carbohydrate estimates to be able to dose insulin or inform my automated insulin delivery system about what I’m eating). In part, because I set up a spreadsheet to learn from what I’m doing, so I need to count it, input it into my spreadsheet, and then analyze the data later. I know I won’t always need to do this, and eventually I’ll learn intuitively what dosing I need for different types of meals.

But, I now have to remember to get out my PERT, take it “with the first bite” (which I interpret as swallow the PERT and then immediately try to put a bite of food in my mouth so I match the timing of the food with the PERT), then write down the timing of when I took my PERT and input the fat and protein and details of the meal into my spreadsheet…and then remember to also enter carbohydrates into my automated insulin delivery system (which I don’t have to do, but I get better outcomes with a meal announcement so I want to do so. When I’m not working on PERT titration, it doesn’t feel like a burden.).

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Although I am grumbling about the titration learning curve and process of figuring out my dosing and what I am eating, I know it’s like any learning curve: I will figure it out soon, and the routine of taking PERT will become as easy as remembering to enter carbs or take insulin for what I’m eating.

And as a short-term benefit and reward of learning to dose PERT for what I’m eating, I feel so much better. Immediately, after every meal, as well as the next day, and I also feel better overall while improving other ‘symptoms’ that I didn’t realize were correlated with my EPI. Hooray!

What it’s like to start on Pancreatic Enzyme Replacement Therapy (PERT)

PS – make sure to check out my other posts about EPI at DIYPS.org/EPI, including the one about  PERT Pilot, the first iOS app for Exocrine Pancreatic Insufficiency that I built! It’s an iOS app that allows you to record as many meals as you want, the PERT dosing and outcomes, to help you visualize and review more of your PERT dosing data!

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You can also contribute to a research study and help us learn more about EPI/PEI – take this anonymous survey to share your experiences with EPI-related symptoms!

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What You Should Know About Exocrine Pancreatic Insufficiency (EPI) or Pancreatic Exocrine Insufficiency (PEI)

by Dana Lewis

I have a new part-time job as a pancreas, but this time, I don’t have any robot parts I can make to help.

This is a joke, because I have had type 1 diabetes for 19+ years and 7 years ago I helped make the world’s first open-source artificial pancreas, also known as an automated insulin delivery system, that we jokingly call my “robot parts” and takes care of 90+% of the work of living with type 1 diabetes. PS if you’re looking for more information, there’s a book for that, or a free 3 minute animated video explaining automated insulin delivery. 

The TL;DR of this post is that I have discovered I have a mild or moderate exocrine pancreatic insufficiency, known as EPI (or PEI, pancreatic exocrine insufficiency, depending on which order and acronym you like). There’s a treatment called pancreatic enzyme replacement therapy (PERT) which I have been trying.

It took a long time for me to get diagnosed (almost 2 years), so this post walks through my history and testing process with my gastroenterologist (GI doctor) and the importance of knowing your own body and advocating for yourself when something is wrong or not quite right.

Background

About six years after I was diagnosed with type 1 diabetes, I was doing a summer internship in Washington, D.C. (away from home) and started getting chest tightness and frequent abdominal pain. Sometimes it felt like my abdominal muscles were “knitting” into each other. Because I had type 1 diabetes, I had heard at one point that about 10% of people with type 1 also develop celiac disease. So, thankfully, it was as simple as calling my endocrinologist and scheduling testing, and getting an endoscopy and biopsy to confirm I had celiac disease. It took about 2 months, and the timing was mostly that long due to getting back to Alabama after my internship and the testing schedule of the hospital. This is relevant detail, because I later read that it takes an average of 7 years for most people to get diagnosed with celiac disease. That has been floating around in my brain now for over a decade, this awareness that GI stuff is notoriously hard to diagnose when you’re not lucky enough to have a clear idea, like I did, of an associated condition.

So, with type 1 diabetes and celiac disease, I use automated insulin delivery to get great outcomes for my diabetes and a 100% very careful gluten-free diet to manage my celiac disease, and have not had any GI problems ever since I went gluten-free.

Until January/February 2020, when I took an antibiotic (necessary for an infection I had) and started to get very minor GI side effects on day 5 of the 7-day antibiotic course. Because this antibiotic came with a huge warning about C. diff, and I really didn’t want C. diff, I discontinued the antibiotic. My infection healed successfully, but the disruption to my GI system continued. It wasn’t C. diff and didn’t match any of the C. diff symptoms, but I really lost my appetite for a month and didn’t want to eat, so I lost 10 pounds in February 2020. On the one hand, I could afford to lose the weight, but it wasn’t healthy because all I could bring myself to eat was one yogurt a day. I eventually decided to try eating some pecans to add fiber to my diet, and that fiber and change in diet helped me get back to eating more in March 2020, although I generally was eating pecans and dried cranberries (to increase my fiber intake) for breakfast and wasn’t hungry until late afternoon or early evening for another meal. So, since my body didn’t seem to want anything else, I essentially was eating two meals a day. My GI symptoms were better: not back to how they were before February 2020, but seemed manageable.

However, in July 2020, one night I woke up with incredibly painful stabbing abdominal pain and thought I would need to go to the ER. Thankfully, it resolved enough within minutes for me to go back to sleep, but that was scary. I decided to schedule an appointment with my gastroenterologist. I took in a record of my symptoms and timing and explained what was most worrisome to me (sudden stabbing pains after I ate or overnight, not seemingly associated with one particular type of food; changes in bathroom habits, like steatorrhea, but not as severe as diarrhea). He made a list of suspected things and we began testing: we checked for C. diff (nope), parasites (nope), bloodwork for inflammation (nope, so no Crohn’s or IBS or IBD), my celiac markers to make sure I wasn’t being accidentally glutened (nope: 100% gluten-free as proven by the blood work), H. pylori (nope), and did a CT scan to check for structural abnormalities (all good, again no signs of inflammation or any obvious issues).

Because all of this happened during the global COVID-19 pandemic, I was cautious about scheduling any in-person tests such as the CT scan or the last test on my list, a colonoscopy and endoscopy. I have a double family history of colon cancer, so although it was extremely unlikely, given everything else on the list was coming back as negative, it needed to be done. I waited until I was fully vaccinated (e.g. 2 weeks after 2 shots completed) to have my colonoscopy and endoscopy scheduled. The endoscopy was to check for celiac-related damage in my small intestine since I hadn’t had an endoscopy since my diagnosis with celiac over a decade ago. Thankfully, there’s no damage from celiac (I wasn’t expecting there to be any damage, but is a nice confirmation of my 100% very careful gluten free diet!), and the colonoscopy also came back clear.

Which was good, but also bad, because…SOMETHING was causing all of my symptoms and we still didn’t know what that was. The last thing on my doctor’s list was potentially small intestine bacterial overgrowth (SIBO), but the testing is notoriously non-specific, and he left it up to me as to whether I decided to treat it or not. Having run out of things to test, I decided to do a two-week course of an antibiotic to target the bacteria. It helped for about two weeks, and then my symptoms came back with a vengeance. However, I had realized in spring 2021 (after about 9 months of feeling bad) that sometimes the stabbing abdominal pain happened when I ate things with obvious onion or garlic ingredients, so January-July 2021 I had avoided onion and garlic and saw a tiny bit of improvement (but nowhere near my old normal). Because of my research on onion and garlic intolerances, and then additional research looking into GI things, I realized that the low FODMAP diet which is typically prescribed for IBS/IBD (which I don’t have) could be something I could try without a lot of risk: if it helped, that would be an improvement, regardless of whatever I actually had.

So in August 2021, as noted in this blog post, I began the low FODMAP diet first starting with a careful elimination phase followed by testing and adding foods back into my diet. It helped, but over time I’ve realized that I still get symptoms (such as extreme quantities of gas, abdominal discomfort and distention, changed bathroom habits) even when I’m eating low FODMAP. It’s possible low FODMAP itself helped by avoiding certain types of food, but it’s also possible that it was helping because I was being so careful about the portions and timing of when I was eating, to avoid “stacking” FODMAPs.

One other thing I had tried, as I realized my onion and garlic intolerance was likely tied to being “fructans”, and that I had discovered I was sensitive to fructans in other foods, was an enzyme powder called Fodzyme. (I have no affiliation with this company, FYI). The powder works to target the FODMAPs in food to help neutralize them so they don’t cause symptoms. It worked for me on the foods I had experimented with, and it allowed me to eat food that had onion powder or garlic powder listed as a minor ingredient (I started small and cautious and am working my way up in testing other foods and different quantities). I longingly wished that there were other enzymes I could take to help improve digestion, because Fodzyme seemed to not only reduce the symptoms I had after I ate, but also seemed to improve my digestion overall (e.g. improved stool formation). I did some research but “digestive enzymes” are generally looked down upon and there’s no good medical research, so I chalked it up to snake oil and didn’t do anything about it.

Until, oddly enough, in November 2021 I noticed a friend’s social media post talking about their dog being diagnosed with exocrine pancreatic insufficiency (EPI). It made me go look up EPI in humans to see if it was a thing, because their experience sounded a lot like mine. Turns out, EPI is a thing, and it’s very common in humans who have cystic fibrosis; pancreas-related surgeries or pancreatic cancer; and there is also a known correlation with people with type 1 diabetes or with celiac disease.

Oh hey, that’s me (celiac and type 1 diabetes).

I did more research and found that various studies estimate 40% of people with type 1 diabetes have low levels of pancreatic elastase, which is a proxy for determining if you have insufficient enzymes being produced by your pancreas to help you digest your food. The causal mechanism is unclear, so they don’t know whether it’s just a ‘complication’ and side effect of diabetes and the pancreas no longer producing insulin, or if there is something else going on.

Given the ties to diabetes and celiac, I reached out to my GI doctor again in December 2021 and asked if I should get my pancreatic elastase levels tested to check for exocrine pancreatic insufficiency (EPI), given that my symptoms matching the textbook definition and my risk factors of diabetes and celiac. He said sure, sent in the lab request, and I got the lab work done. My results are on the borderline of ‘moderate’ insufficiency, and given my very obvious and long-standing symptoms, and given my GI doc said there would be no harm from trying, I start taking pancreatic enzyme replacement therapy (called PERT). Basically, this means I swallow a pill that contains enzymes with the first bite of food that I eat, and the enzymes help me better digest the food I am eating.

And guess what? For me, it works and definitely has helped reduce symptoms after I’m eating and with next-day bathroom habits. So I consider myself to have mild or moderate exocrine pancreatic insufficiency (EPI).

(Also, while I was waiting on my test results to come back, I found that there is a lipase-only version of digestive enzymes available to purchase online, so I got some lipase and began taking it. It involves some titration to figure out how much I needed, but I saw some improvement already from low doses of lipase, so that also led me to want to try PERT, which contains all 3 types of enzymes your pancreas normally naturally produces, even though my elastase levels were on the borderline of ‘moderate’ insufficiency. Not everyone with lower levels of elastase has insufficiency in enzymes, but my symptoms and response to lipase and PERT point to the fact that I personally do have some insufficiency.)

More about my experiences with exocrine pancreatic insufficiency

Unfortunately, there is no cure for exocrine pancreatic insufficiency. Like Type 1 diabetes, it requires lifelong treatment. So, I will be taking insulin and now PERT likely for the rest of my life. Lazy pancreas! (Also, it’s possible I will need to increase my PERT dose over time if my insufficiency increases.)

Why treat EPI? Well, beyond managing very annoying symptoms that impact quality of life, if left untreated it’s associated with increased mortality (e.g. dying earlier than you would otherwise) due to malnutrition (because you’re not properly absorbing the nutrients in the food you’re eating) and bone density problems.

Oddly enough, there seem to be two versions of the name (and therefore two acronyms) for the same thing: EPI and PEI, meaning exocrine pancreatic insufficiency or pancreatic exocrine insufficiency. I haven’t found a good explanation for why there are two names and if there are any differences. Luckily, my research into the medical literature shows they both pop up in search results pretty consistently, so it’s not like you end up missing a big body of literature if you use one search term or the other.

Interestingly, I learned 90% of people with cystic fibrosis may need PERT, and thankfully my friend with CF didn’t mind me reaching out to ask her if she had ever taken PERT or had any tips to give me from her knowledge of the CF community. That was nice that it turns out I do know some other people with EPI/PEI, even though they don’t usually talk about it because it seems to go hand in hand with CF. Some of the best resources of basic information about EPI/PEI are written either by CF foundations or by pancreatic cancer-related organizations, because those are the two biggest associated conditions that also link to EPI/PEI. There are also other conditions like diabetes and celiac with strong correlations, but these communities don’t seem to talk about it or have resources focused on it. (As with low FODMAP resources where everything is written for IBS/IBD, you can extrapolate and ignore everything that’s IBS/IBD specific. Don’t be afraid to read EPI/PEI information from communities that aren’t your primary community!)

Sadly, like so many GI conditions (remember in the intro I referenced 7 years average diagnosis time with celiac), it seems ridiculously hard to get to a diagnosis of EPI. I essentially self-diagnosed myself (and confirmed the diagnosis in partnership with my GI doc who agreed to run the tests). I am still very surprised that it never came up on his list of possible conditions despite having symptoms that are textbook EPI and having diabetes and celiac, which are known correlations. Apparently, this is common: I read one study that says even people with super high-risk factors (e.g. pancreas surgery, pancreatic cancer) aren’t necessarily screened, either! So it’s not just me falling through the cracks, and this is something the gastroenterology world needs to be better about. It’s also common for patients to bring this up to their doctors vs their doctors suggesting it as a potential diagnosis – this study found 24% of people brought up EPI, like I did, to their doctors.

Also, unfortunately, I had a few people (including family members) suggest to me in the last two years that my symptoms are psychosomatic, or stress-related. They’re clearly, as proven by lab work, not psychosomatic or stress-related but are a result of my exocrine pancreatic functions failing. Please, don’t ever suggest someone dealing with GI issues is experiencing symptoms due to stress – this is the kind of comment you should keep to yourself. (The last time someone mentioned this to me was months ago, and it still bothers me to think about it.)

Advocate for yourself

One of the very important things I learned early on when living with type 1 diabetes was the importance of knowing my own body, and advocating for myself. This unfortunately was a hard lesson learned, because I had general practice (GP or primary care / PCP) doctors who would refuse to treat me because I had diabetes because they were concerned about prescribing something that would mess up my blood sugars. They’d completely ignore the point that whatever infection I had would cause MORE disruption to my blood sugars by having me be sick and suffer longer, than I would have disruption to my blood sugar levels from a prescription. Sigh. So for the last almost two decades, I have had to go into every health encounter prepared to advocate for myself and make sure I get the medical expertise for whatever I’m there for, and not the less experienced take on diabetes (assuming I wasn’t there for diabetes, which I usually wasn’t).

This has translated into how I approached finding solutions for my GI symptoms. Per my history described above, I had increasing but minor GI symptoms from February-July 2020. Having new, stabbing pains in my abdomen led me to the gastroenterologist for a long list of testing for various things, but I had to continue to push for the next round of testing and schedule and manage everything to proceed through the list we had discussed at my appointment. Later, after we ran through the list, I had to try things like low FODMAP for myself, and then do additional research and identify the test for EPI as a likely next step to try.

I felt a little like the ‘boiling frog’ analogy, where my symptoms gradually worsened over time, but they weren’t startling bad (except for the points in time when I had stabbing abdominal pain). Or the two times, almost one year apart (Oct 2020 and Dec 2021) where I had what I considered bad “flares” of something where I got really hot and feeling really ill all of a sudden, but it wasn’t COVID-19 and it wasn’t anything specific causing it, there were no obvious food triggers, and the only thing I could do was lay down for 2-3 hours and rest before I started to feel better. Those were probably correlated with “overdoing it” with physical activity, but I’ve also run a marathon and a 50k ultramarathon in the last year and didn’t have problems on those days, so there’s not a certain threshold of activity that appears to cause that. Thankfully, that has only happened two times.

Other than those scenarios, it wasn’t like breaking my ankle where there was a clear “everything was fine and now something is broken”, but it was more like “I have had not-good-digestion and various increasing GI symptoms that don’t fit any clear problem or diagnosis on our shortlist of the 5 likely things it might be. It’s not excruciating but it is increasingly impacting my quality of life, and twisting myself into a pretzel with an evolving pattern of dietary modifications is not solving it”. It took me continuing to advocate for myself and not accepting suffering for the rest of my life (hopefully!) with these symptoms to get to an answer, which for me, so far, seems to be moderate exocrine pancreatic insufficiency.

What it’s like to start taking pancreatic enzyme replacement therapy (PERT)

PERT is typically measured by the units/amount of lipase it contains, even though it contains all 3 types of enzymes. (Some of the Medicare documents in different states actually are really helpful for comparing the size of dosing across the different brands of PERT. That also helped me look up the various brands in my insurance plan to see whether there would be a price difference between two of the most common brands.) Depending on symptoms and your level of insufficiency, like insulin, it requires some titration to figure out the right doses. I’ve been attempting to track generally the amount of fat that I’m eating to try to get a sense of my “ratio” of fat to lipase needed, although the research shows there is likely not a linear correlation between grams of fat and units of lipase needed. Another way to think about it is at what level of grams of fat in your meal do you need more than your current dose. For example, one pill of PERT at my current dose seems to work up to around 70 or so grams of fat per meal, as long as it doesn’t have more than 50% protein. Meals containing much more fat (120 g or so) definitely require more, as do meals with either a higher quantity of protein or a closer ratio of 1:1 fat to protein.

Different people have different needs with regard to whether they need enzyme support “just” for fat, or also for protein and carbs. I appear to at least need some support for carbs as well as protein, but am still establishing at what levels I need which dosing of which enzymes.

Personally, I am tracking to see whether my symptoms are reduced or eliminated in the hours following my meals (gas, abdominal discomfort, a sick feeling after eating) as well as the next day (bloating/abdominal distension, bathroom habits such as reduced steatorrhea), and overall whether I have any more of those really bad “flares”. My initial tests of taking PERT show improvements after my meals (I don’t feel sick after I eat anymore!) and often the next day.

After the first few days of trying food that was low FODMAP but giving me minor symptoms before PERT, I’ve also felt confident enough to try meals that I’ve avoided eating for over a year, such as a gluten free burger from one of our nearby local favorites! Even though it’s been well over a year since I’ve had it last, I immediately could tell a difference in how I felt eating it, due to taking PERT with it. There was no wave of fatigue before I was halfway through the burger, and no gas or feeling sick to my stomach after eating. I had clearly forgotten what it was like to not feel miserable after eating and to actually enjoy eating food! So far, PERT has been exceeding my expectations (although those were rather low).

It makes it slightly less annoying, then, to think about the price of PERT. Roughly, one month of PERT at the dosage I’m currently on costs the same as 3 vials of insulin in the US (in the ballpark of $800). Like insulin, PERT is necessary and worthwhile (and thankfully I do have health insurance).

Pancreases are great when they work…and expensive to replace!

A play on the spiderman meme of two spiderman's pointing at each other, indicating similar things. Labeled "exocrine pancreatic functions" and "endocrine pancreatic functions", indicating both of mine are not working as they should be.

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TLDR: I have a new thing, exocrine pancreatic insufficiency, to deal with. Thankfully, there’s a treatment (PERT) that I can use to reduce symptoms and hopefully limit the potential impacts on morbidity long term. If you have diabetes or celiac and you have unexplained GI symptoms over time, you might want to do some research into EPI and discuss it with your gastroenterologist.

Also…for any endocrinologist reading this…or any other healthcare providers…if you have patients with diabetes and suspected GI issues, please consider EPI as a possible diagnosis once you’ve ruled out celiac disease and other likely suspects. Given the high rates of lowered elastase in all types of diabetes, it’s worth screening for EPI in patients with otherwise-unexplained steatorrhea or similar symptoms.

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PS – if you land on this post and haven’t seen it already, you may want to check out PERT Pilot, the first iOS app for Exocrine Pancreatic Insufficiency! It’s an iOS app that I built that allows you to record as many meals as you want, the PERT dosing and outcomes, to help you visualize and review more of your PERT dosing data!

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You can also contribute to a research study and help us learn more about EPI/PEI – take this anonymous survey to share your experiences with EPI-related symptoms!

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Looking back at work and accomplishments in 2021

by Dana Lewis

I decided to do a look back at the last year’s worth of work, in part because it was a(nother) weird year in the world and also because, if you’re interested in my work, unless you read every single Tweet, there may have been a few things you missed that are of interest!

In general, I set goals every year that stretch across personal and professional efforts. This includes a daily physical activity streak that coincides with my walking and running lots of miles this year in pursuit of my second marathon and first (50k) ultramarathon. It’s good for my mental and physical health, which is why I post almost daily updates to help keep myself accountable. I also set goals like “do something creative” which could be personal (last year, knitting a new niece a purple baby blanket ticked the box on this goal!) or professional. This year, it was primarily professional creativity that accomplished this goal (more on that below).

Here’s some specifics about goals I accomplished:

RUNNING

  • My initial goal was training ‘consistently and better’ than I did for my first marathon, with 400 miles as my stretch goal if I was successfully training for the marathon. (Otherwise, 200 miles for the year would be the goal without a marathon.) My biggest-ever running year in 2013 with my first marathon was 356 miles, so that was a good big goal for me. I achieved it in June!
  • I completed my second marathon in July, and PR’d by over half an hour.
  • I completed my first-ever ultramarathon, a 50k!
  • I re-set my mileage goal after achieving 400 miles..to 500..600…etc. I ultimately achieved the biggest-ever mileage goal I’ve ever hit and think I ever will hit: I ran 1,000 miles in a single year!
  • I wrote lots of details about my methods of running (primarily, run/walking) and running with diabetes here. If you’re looking for someone to cheer you on as you set a goal for daily activity, like walking, or learning to run, or returning to running…DM or @ me on Twitter (@DanaMLewis). I love to cheer people on as they work toward their activity goals! It helps keep me inspired, too, to keep aiming at my own goals.

CREATIVITY

  • My efforts to be creative were primarily on the professional side this year. The “Convening The Center” project ended up having 2 out of 3 of my things that I categorized as being creative. The first was the design of the digital activities and the experience of CTC overall (more about that here). The second were the items in the physical “kit” we mailed out to participants: we brainstormed and created custom playing cards and physical custom keychains. They were really fun to make, especially in partnership with our excellent project artist, Rebeka Ryvola, who did the actual design work!
  • My third “creative” endeavor was a presentation, but it was unlike the presentations I usually give. I was tasked to create a presentation that was “visually engaging” and would not involve showing my face in the presentation. I’ve linked to the video below in the presentation section, but it was a lot of work to think about how to create a visually and auditory focused presentation and try to make it engaging, and I’m proud of how it turned out!

RESEARCH AND PUBLICATIONS

  • This is where the bulk of my professional work sits right now. I continue to be a PI on the CREATE trial, the world’s first randomized control trial assessing open-source automated insulin delivery technology, including the algorithm Scott and I dreamed up and that I have been using every day for the past 7 years. The first data from the trial itself is forthcoming in 2022. 
  • Convening The Center also was a grant-funded project that we turned into research with a publication that we submitted, assessing more of what patients “do”, which is typically not assessed by researchers and those looking at patient engagement in research or innovation. Hopefully, the publication of the research article we just submitted will become a 2022 milestone! In the meantime, you can read our report from the project here (https://bit.ly/305iQ1W ), as this grant-funded project is now completed.
  • Goal-wise, I aim to generate a few publications every year. I do not work for any organization and I am not an academic. However, I come from a communications background and see the benefit of reaching different audiences where they are, which is why I write blog posts for the patient community and also seek to disseminate knowledge to the research and clinical communities through traditional peer-reviewed literature. You can see past years’ research articulated on my research page (DIYPS.org/research), but here’s a highlight of some of the 2021 publications:
  • Also, although I’m not a traditional academic researcher, I also participate in the peer review process and frequently get asked to peer-review submitted articles to a variety of journals. I skimmed my email and it looks like I completed (at least) 13 peer reviews, most of which included also reviewing subsequent revisions of those submitted articles. So it looks like my rate of peer reviewing (currently) is matching my rate of publishing. I typically get asked to review articles related to open-source or DIY diabetes technology (OpenAPS, AndroidAPS, Loop, Nightscout, and other efforts), citizen science in healthcare, patient-led research or patient engagement in research, digital health, and diabetes data science. If you’re submitting articles on that topic, you’re welcome to recommend me as a potential reviewer.

PRESENTATIONS

  • I continued to give a lot of virtual presentations this year, such as at conferences like the “Insulin100” celebration conference (you can see the copy I recorded of my conference presentation here). I keynoted at the European Patients Forum Congress as well as at ADA’s Precision Diabetes Medicine 2021; an invited talk ADA Scientific Sessions (session coverage here); the 2021 Federal Wearables Summit: (video here); and the BIH Clinician Scientist Symposium (video here), to name a few (but not all).
  • Additionally, as I mentioned, one of the presentations I’m most proud of was created for the Fall 2021 #DData Exchange event:

OTHER STUFF

I did quite a few other small projects that don’t fit neatly into the above categories.

One final thing I’m excited to share is that also in 2021, Amazon came out with a beta program for producing hardcover/hardback books, alongside the ability to print paperback books on demand (and of course Kindle). So, you can now buy a copy of my book about Automated Insulin Delivery: How artificial pancreas “closed loop” systems can aid you in living with diabetes in paperback, hardback, or on Kindle. (You can also, still, read it 100% for free online via your phone or desktop at ArtificialPancreasBook.com, or download a PDF for free to read on your device of choice. Thousands of people have downloaded the PDF!)

Now available in hardcover, the book about Automated Insulin Delivery by Dana M. Lewis

How to run 1,000 miles in a year

by Dana Lewis

Everything I read about “how I ran 1,000 miles!” didn’t actually explain how to run 1,000 miles. Or it did, but not in terms I could understand.

For context, I’m a slow runner. REALLY slow. My fast days (12-13 minute miles) are most people’s super slow days. More often, I’m a 14-15 minute per mile runner. And I historically haven’t run very much. Most years I ran ~60 miles. My biggest running year was the year I ran my first marathon (2013), when I accomplished 356 miles. Since then, I’ve never gone much above 200 on a really good year. It didn’t help that I broke my ankle in January of 2019 – or maybe it did, because it made me determined to learn how to walk and run again, and use running to help me regain and improve my overall biomechanics. So I decided to run a second marathon in 2020, which was canceled from the pandemic, and 2021 became the year of the second marathon. It was scheduled for July 2021, and my goal was 400 miles for the year IF I was successfully training for the marathon, and back to a “stretch” goal of 200 miles if I didn’t end up training (because of injury or other reasons like the pandemic).

But I set out, managed 400 and even 600 miles by the end of July when I ran the full marathon. And because my training had gone well (more below with the “how to”), I decided to also continue training and tackle a 50k (31 mile) ultramarathon at the end of September. From there, I thought I’d be stuck around 800 miles but then I decided with effort that I could make 1,000 miles. And I did. Here’s how it happened:

My activity tracker after it hit 1000 miles of running

Baby steps, a focus on process, and a heck of a spreadsheet. Or as they say in answer to “how do you eat an elephant?”, “one bite at a time”, ergo, one run at a time.

I focused on building consistency first, and at a weekly level. My goal was 3 runs per week, which I had never consistently managed to do before. That started as Monday, Wednesday, Friday, with a rest day in between each run. After a few months, I was able to add a 4th run to my week, which was often Saturday. This was my first time running back to back days, and so I started with my 4th run being only one mile for a few weeks, then increased it to two miles, then up to 3 miles. My other three runs consisted of one “long” run and two other short, 3ish mile runs.

The focus on consistency at a weekly level is what enabled me to run 1,000 miles in a year. Even 400 miles felt like too much for me to tackle. But 3 (then 4) runs a week? I could focus on that.

The spreadsheet helped. I had the number of miles for each run laid out. After I completed the run (using Runkeeper tracking on my phone so I knew how far I’d gone), I would hop on my spreadsheet (using Google sheets so it could be on my laptop or on my phone), and log the miles. I found just recording in Runkeeper wasn’t a good enough psychological anchor, I wanted to “write down” the run in some way. The other thing I did was put checkboxes for the number of runs per week into my spreadsheet, too (did you know you can do that? Awesome Google Sheets feature.) So it was satisfying to open my sheet and first, check the box that I had done one of my weekly runs. Then, I entered the miles for the run. I had put in conditional formatting to check for how many miles I was “supposed” to run for that run, so that if I was within a half mile or over the run distance, it turned bright green. Another nice feedback mechanism. If I was off by more than half a mile, it was a lighter green. But regardless, it turned a nice color and emphasized that I had been putting in some miles. And, I also had a formula set to calculate the weekly total, so after each run I could see my weekly total progress. (Again, all of this is automatically done in Runkeeper or Strava, but you have to go to a different screen to see it and it’s not as satisfying to be able to track inputs against multiple outputs such as weekly, monthly, and overall totals at a glance, which is how I designed my spreadsheet).

I added a miniature chart to visualize weekly mileage throughout the year, and also a chart with a monthly view. All of these made it easier to “see” progress toward the big mileage goals.

If you’re a well-established runner, that might sound silly. But if you’re trying to build up to consistent running…find a feedback mechanism or a series of logging mechanisms (maybe it’s a bullet journal, or a handwritten chart or log, or moving marbles from one jar to another) that you can do to help cement and anchor the completion of a run. Especially when running feels hard and terrible, it’s nice to find something positive and constructive to do at the end of the run to feel like you’re still moving forward toward your goal, even when it’s hard-earned progress.

The ‘baby steps’ I took to build up to 1,000 miles literally started from baby steps: my first run was only 5 steps of running. After I broke my ankle, it was a huge effort to return to weight-bearing and walking. Running was also a huge hurdle. I started with literally running 5 steps…and stopping. Calling that a success, and going home and logging it on my sheet with a checkbox of “done!”. The second time I went, I did 5 steps, walked a while, then did a second 5 steps. Then I stopped, went home, checked the box, etc. I focused on what the smallest running I could do successfully without pain or stress, built up a series of intervals. Once I had 10 intervals strung together, I expanded my intervals of running. 10 seconds, 20 seconds, 30 seconds, etc. That took months, and that was ok. The point I focused on was the attempt: go out and “run”, with the smallest measurable interval counting as success, and not worrying about or really even focusing on overall mileage. In part, because the amounts were SO small (0.07 miles, 0.12 miles, etc – nothing to write home about). Most people who talk about starting running focus on “30 minutes” or “1 mile” or “5k” which felt so far beyond my reach coming off of the broken ankle.

So take it from me (or really, don’t listen to anyone else, including me): focus on YOUR achievable interval of running (even if it’s measured in a handful of steps), do that, call it a win, and repeat it. Over and over. You’ll find you build some strength and endurance and improve your biomechanics over time, even with baby steps and small intervals of running. The consistency and repeated efforts are what add up.

It’s ok if you find a distance or time interval that you can’t go past – maybe it’s 15 seconds or 30 seconds (or more or less) of consecutive running that’s your sweet spot. Great, stick with it. Run that interval, then walk, then run again. There’s no wrong answer for what’s the best length of interval for you. I had a bunch of foot issues pop up when I was trying to lengthen my intervals, and it turns out 30 seconds of running is my sweet spot. I can run longer (now) but I still prefer 30 seconds because psychologically and physically that feels best, whether I’m running faster or slower. So I do most of my runs with a run of 30 seconds, then walking whatever intervals I want for that run, e.g. 30:30 (run 30 seconds, walk 30 seconds), or 30:60 (run 30 seconds, walk 60 seconds), etc.

Don’t believe it’s possible to do long distances that way? I did it for my 50k ultramarathon. In my July marathon I ran 60 seconds and walked 30 seconds. I achieved my time goal but it was hard and less fun during the race. For my ultramarathon two months later, my goal was to just finish before the time limit and to have more fun than I did during the marathon. I used 30 second run, 60 second walk intervals for the ultramarathon, and it was fantastic. I beat my time goal (finishing hours before the cutoff), and felt awesome throughout and at the end of the 50k. I even passed people at the end!

Remember, there are no rules in running, other than the ones you make for yourself. But don’t listen to rules you read on the internet and feel bad because you can’t do what other people do. Do what you can, repeat it, build up safely, and if you’re having fun you’ll be more likely to continue. And like my running 1,000 miles in a year, you may find yourself reaching goals that you never would have thought were possible!

What we learned from “Convening The Center”

by Dana Lewis

Like our previous RWJF-funded project, “Opening Pathways”, where we took time to reflect at the end of the project and also openly shared our grant-end narrative report that we submit to RWJF, John Harlow and I wanted to also share the grant-end narrative report that we created for RWJF for the Convening The Center project. The questions are based on their template. If you have any other questions about the Convening The Center project (background about it here), please do ask!

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  1. What was the goal of your project? Do you have measures of your performance?

Our original goal was to convene THE center of healthcare, which means patients and caregivers and those working to effect change in the healthcare system from the ‘outside’. We originally planned for an all-expenses paid in-person physical meeting, gathering people from within the U.S. at a central location that would be relatively easy (within 2-3 hours of flying) to travel to for most individual participants. We aimed to gather 25 participants.

However, we were awarded our grant in December 2019 and saw the impact of COVID-19 early on in our communities (especially PI Lewis’s community of Seattle, where COVID-19 was first detected in the US in late January/early February 2020), and knew we would need to postpone the physical meeting from 2020 to at least spring 2021 at the earliest. As months passed, we realized the pandemic would not in fact be ‘over’, and debated between cancelling the grant or converting to a digital experience. We did not want to lose the opportunity to gather this type of community, and chose to switch to a digital meeting.

We spent significant amounts of time considering how to achieve the goals of our meeting (bringing together 25 people who didn’t necessarily know each other or have shared goals, beyond a broad overarching goal of improving healthcare, and giving them space to connect without forcing an agenda upon them). We ultimately decided to make our digital meeting a three-phase “experience:”

  • The first phase would involve one-to-one conversations that would allow us to deeply listen and understand the perspectives of each participant. We would use a visual notetaker to illustrate their story and work as a way to reflect back what we heard, as well as offer the artwork as a gift to participants as a thank you for sharing their experiences with us. These conversations would then shape the following phases.
  • The second phase was small-group conversations of up to 8 people maximum, which we chose based on a combination of availability and ensuring a mixed group of participants where there wasn’t necessarily one person or personality that would dominate a group conversation. There was no agenda, but we used Google Slides with some introductory activities to help people introduce themselves or their work in a non-threatening way, and facilitated topics of conversation for the group to dive into. We had four total groups in phase 2. We again had visual notetaking to represent each group’s conversation.
  • The third phase was a single meeting with all 25 participants present. We chose a mix of small group breakouts, based on thematic topics that were discussed in phase 2 and voted upon by participants; as well as providing a small group mix based on people they had not yet met in previous groupings; and also small groups based on affinity groups that the PI/Co-PI selected based on what we learned of people’s work in phase 1-2. After the rounds of breakouts, the group returned together for a discussion with all 25 participants based on whatever topic they wished to discuss.

And, at the end of the project we had $9,000 USD remaining as a result of the pivot to a digital meeting. We decided to select nine individuals (through additional public recruitment) for “internet scholarships”, to continue to address the needs of this community. We successfully selected 9 recipients who each accepted the scholarship.

The project overall was a success.

  • We were able to convene 25 participants from around the world and allow them to discuss whatever topics were most important to them.
  • Because we went digital/virtual, we were able to facilitate participation from non-US based participants which greatly enriched the discussions.
  • Participants consistently communicated surprise and delight after each phase of the project regarding how well they felt listened to, respected, and treated during the experience.
  • We used a visual notetaker as a subcontractor, and her work was a critical factor of our success. Rebeka Ryvola is an experienced conference visual notetaker and artist, and although she had not previously worked in healthcare, her ability to listen to a deeply technical healthcare conversation and reflect high level themes from individual stories as well as across a diverse group of participants is unparalleled. Her art as an artifact of each discussion was critical for allowing participants to feel heard and respected, as well as providing a way to introduce themselves to each other within the cohort.
  • Rebeka’s art for the individuals in phase 1 as well as the Phase 2 and Phase 3 pieces of art is already being widely shared and touted.
  • All 9 selected recipients of the internet scholarships accepted them.
  1. Do you have any stories that capture the impact of this project?

    One of our goals was to pay people for their time. Patients and caregivers are seldom paid for their time and expertise, although they offer invaluable expertise and solutions for improving healthcare.One individual, a parent with their own health situation as well as a parent of children with their own health situations, had served on a hospital advisory committee and numerous projects. However, until Convening The Center, this individual had never been paid for their time or work. They mentioned this numerous times throughout the project, almost in disbelief, that they were being paid for the first time for this type of time commitment. It was almost embarrassing to us for being the first people to pay them for their time on a project, although we are grateful for the resources of this grant that enabled us to pay each participant for their time.

    In general, while we as PI/Co-PI know the power of bringing people together through social media and virtually, and we expected many of the participants (by virtue of finding this project) were already connected to numerous patient communities or organizations, we were surprised by the number of comments that participants made about the power of this convening. Two quotes stuck out to us, from an experienced patient advocate and from a newer patient advocate:

  • “Getting to meet you all, truly made me feel not alone in what often feels overwhelming and hard.”
  • [It was powerful] “bringing so many people from all corners together. I’m still building my confidence as a speaker and these opportunities to connect in a Round Robin sort of way was impactful, for someone who is still finding their voice as an advocate”(See Appendix at end for additional stories!)
  1. Did RWJF assist or hinder your project in any way?

RWJF assisted immensely by allowing us to submit a re-budget request and allowing us to shift to a virtual meeting while maintaining the existing level of budget. This was significant, because had we originally submitted a proposal for a virtual meeting, I think the grant would have been rejected/not awarded. Or, it may have been awarded with a significantly lower budget amount.

However, keeping the level of budget allowed us to spend significant amounts of time designing an inclusive, immersive digital experience that allowed us to bridge the participants’ physical worlds with our virtual meeting. We were able to do this by designing a “kit” to send to each participant, including international participants, with thoughtfully designed and curated items to aid them in their participation in this project. A typical virtual meeting would not have supported the budget for this type of ‘kit’ nor the PI/Co-PI’s increased time to design a thoughtful, effective, inclusive virtual meeting.

It also allowed us to facilitate the inclusion of participants from around the world. With a physical meeting, we were limited in budget to only US participants because of the travel cost variance with international travel. We were able to include participants from Costa Rica, Sweden, India, Pakistan, as well as across the US. We were also able to reach more diverse, under-resourced (including under-funded and under-included), and often minority perspective community members who maybe would not have been able to participate without it being virtual – even with us paying for their time and travel, because of their other family or community commitments.

Finally, because we went to a virtual experience and chose to do three ‘phases’ to build up to the final meeting, rather than a one-day in person meeting, we were able to get to know each participant and build trust over the phases that would not have happened by dropping 25 people into a room together for a physical meeting.

As a result, the permission and support with the same budget to shift to a virtual meeting greatly enriched the experience beyond what we would have originally predicted, and we hope RWJF considers this moving forward when thinking about facilitating similar gatherings of communities or projects.

Specifically within RWJF, our project manager Paul Tarini was helpful as always throughout the project. When we chose to pivot to a virtual meeting, we asked him for his perspective on thoughtful digital gatherings, and he shared not only his own experiences but also introduced us to a number of other RWJF grantees or collaborators to help us research best practices for online engagement for conferences and meetings. Many of the ideas we learned from collaborators such as New Public ended up shaping the phases of our work.

  1. If the project encountered internal or external challenges, how did they affect the project and how did you address them? Was there something RWJF could have done to assist you?

Our main challenges were the COVID-19 pandemic and the timing overall for our grant, because the primary goal was hosting a physical in-person meeting, Per the above section, RWJF assisted us by allowing us to re-budget from a physical in-person meeting to a digital gathering, while permitting the same overall level of budget. This was crucial for our success, because simply hosting a one-time 25 person meeting would not have achieved the goal without the additional design work that was done.

  1. Has your organization received funding from other foundations, corporations or government bodies for the project RWJF has been supporting?

No.

  1. When considering the design and implementation of this project, what lessons did you learn that might help other grantees implement similar work in this field?

We learned quite a lot regarding designing digital experiences that we hope other grantees will be able to leverage, and we hope RWJF will take this feedback into consideration and support other future projects that host virtual convenings.

For example, we learned that it takes more time to design impactful virtual gatherings that are not ‘just another zoom’. It takes design of the meeting itself with a clear ‘run of show’ or agenda, as well as clear pre-communication to participants about what to expect and how the meeting or gathering will go. In some cases, such as for our project, we also found it necessary to break the gathering up into multiple stages, to allow us to get to know participants and build trust to have the open, thoughtful discussions that emerged in phase 2 and 3. Had we simply plopped 25 people together in a virtual meeting as a one-off, it would not have been successful. We also were cognizant of the demand on participants in terms of overall time commitment – people don’t have the stamina for more than 2 hours on a video call – and the demands on internet bandwidth and personal energy for requesting a video call for that time period. We chose max 2 hours for each phase, and encouraged people to choose for themselves whether they had video on or off. We also designed activities to facilitate trust and comfort in the digital environment.

As a result, we learned that going from individual conversations to small group to larger conversations worked well for establishing safe spaces for open conversations. This also enabled relationships to begin growing throughout the project and not only after the ‘main event’ of phase 3. This facilitated the network within the cohort that began to grow as a community. You can’t force a community by dumping people in a place, but you can create a space and facilitate interactions that lead to relationship and network growth, and ultimately a community did evolve.

We also ended up developing a physical ‘kit’ to send to participants. It included a variety of useful items (such as a device cleaning cloth and a device stand, since many people are spending increased amounts of time on devices during the pandemic as well as we were asking them to spend more time on devices for this project). We also custom designed a few special items to honor people’s participation in the project. One of these items was a pack of playing cards that they could give to family or the people supporting them to help them be able to make the space for participating in the project. We also created a custom CTC keychain and provided several additional keychains that each participant could gift to others to honor other advocates, clinicians, and “doers” in the healthcare space who have helped them in their journey or that they want to honor their work. We hoped these keychains would also serve as a memento of their time in the project and be something they could physically hold in the future to give them strength, if they need it. This kit also included a whiteboard and markers, which we used in a variety of ways throughout the project including holding up to show something on screen, which we aimed to tie the offline/online experiences together. We didn’t want to send people “junk” “swag” that would end up in a landfill, and so we included things that we thought would be used by everyone in the cohort and had meaningful ties to the project.

Overall, one of our key design principles was to consistently signal that our gathering was and would be different from random meetings and conferences where people show up, say the same thing, and leave unchanged. We aimed to achieve this by doing everything different, from paying participants, to surprising people with their CTC ‘kit’, and to providing the visual note art as a gift after phase 1 in addition to doing visual notetaking from phase 2 and phase 3 as well. We consistently heard surprise and delight from participants beyond what you would typically receive from participants at a meeting or a conference, so we believe all of these elements of doing a gathering differently were successful, and that “surprise and delight” is an effective design principle for building relationships, creating spaces, and encouraging participation.

  1. What impact do you think the project has had to date?

The project was impactful in and of itself by successfully gathering 25 diverse individuals who have not previously had the opportunity to gather without an agenda forced upon them. Additionally, we were successful by paying each and every participant for their time. (Several individuals had never been paid before for their contributions to meetings, conferences, advisory committees, and/or research projects.)

In addition, it was successful for creating connections to enable network development and growth of relationships for people who don’t have traditional ‘professional development resources’ but benefit greatly from seeing other people ‘like them’ who are working to improve healthcare from the outside.

Through this project, people were able to surface similar challenges and experiences among individuals who felt isolated and ‘lonely’ in their work. They also were able to recognize shared challenges and solutions across disease areas, when they previously were not aware of resources. One example is a participant who shared research advocate training program materials from a specific cancer community, with other participants planning to leverage or mirror those resources in other disease spaces.

Additionally, participants began recognizing similarities across disease communities, with consistent gaps around areas such as transitioning out of pediatric to (young) adult care; lack of inclusivity with established advocacy organizations and online communities; and challenges with interacting with healthcare providers.

As PI/Co-PI we have also developed a novel framework for mapping the efforts of individuals by convening the center of health and healthcare. This is an innovative framework that assesses a spectrum of patient experiences based on what patients do when they go beyond navigating their personal or individual level of lived healthcare experiences and transition toward community or systemic level involvement. We have written up this framework and the results of thematic discussions from CTC in a research article, which we plan to submit to a peer-reviewed publication (and then share here soon!). We hope to inspire further work with this proposed model for facilitating improved matching between individuals and their current or future levels of interest and involvement with researchers, advocacy organizations, and other opportunities.

  1. What are post-grant plans for the project, if it does not conclude with the grant?

No specific plans, as the project technically concludes with the end of the grant.

However, many individuals who participated in this project are planning to work together in the future. For example, several post-meeting meetings have already happened among small groups within the cohort. One such meeting involved a discussion around patient-led research publications and strategy for utilizing blog posts and mainstream media compared to academic journals and traditional research conferences as methods of dissemination of patient community knowledge.

  1. With a perspective on the entire project, what were its most effective communications and advocacy approaches, its key publications, and its national/regional communications activities?

Our most effective communication was through social media. We publicized the project via a blog post shared across Facebook, Twitter, and LinkedIn. It was successful as measured by receiving applications from >60% of individuals that the PI did not recognize the name. From within the selected cohort, there were ~75% unknown participants to the PI/Co-PI, which indicated success in outreach to new networks and communities.

We believe the most effective advocacy approach was empowering individual participants. This project was not about name recognition of the project itself, but we believe by surprising and delighting participants and giving them a positive experience in the project, the ripple effects of this project and RWJF’s funding will continue to be felt for years to come.

APPENDIX:

We shared a draft version of this report with participants of the Convening The Center Cohort, asking for any additional feedback and stories we should include. The following stories and comments were shared as a result:

  1. “I appreciate how you have effectively captured the essence of our Convening The Center experiences. Surprise and delight are positive reinforcements and pragmatic concepts that can catalyze trust leading to trustworthiness; and overall the gatherings were very beneficial in developing a community of individuals who had similar interests with advancing patient and caregiver engagement. I do believe we were each pleased with the concrete extras including; fair compensation, bio-‘art’ifacts, CTC shareable reminders and reflected stories that we each will carry forward. The three tiered model was an effective method allowing for Conveners to listen and learn from each other.”
  2. “I think you captured the essence of my personal experience (I can’t/won’t/shouldn’t speak to the experiences of the others). The only thing I have to say is a hearty thank you to RWJF for allowing this project to proceed virtually. It was an enriching experience, filled with far more diversity (as you pointed out).”
  3. “Many thanks to CTC & grantor RWJF for allowing the power of the pivot to take place!

    Do you have any stories that capture the impact of this project?

    I would add that this experience presented an opportunity to amplify voices of women of color. This group was accepting of my perspective and participating in it further ignited my passion to embrace my efforts as an advocate for an underserved patient population.

    What impact do you think the project has had to date?

    The project inspired me to challenge old ideas of self-doubt and redefine what advocacy means to me. Since the convening, I’ve been empowered to participate in projects that bring forth HPV, Cervical, & Gynecologic Cancer awareness for the Black-Hispanic population. This was a huge moment of growth and development for someone who struggles with social anxiety.

    When considering the design and implementation of this project, what lessons did you learn that might help other grantees implement similar work in this field

    I just wished to add, if others would like to duplicate a similar idea in a virtual capacity, it is important to have systems in place that allow for free flowing communication. This was my first time using Slack and it performed well in my opinion. The platform could be accessed on both pc or mobile device.

    I always felt connected & well-informed. The [Slack] app made it easy to contribute to the discussion with the group throughout the entire project. It also presented the opportunity for members to learn more about one another through introductions and our artwork; all prior to meeting each other virtually.”

A huge thank you to each participant who was a part of Convening The Center!

 

Risk calculation in pandemic and post-pandemic era for assessing travel opportunities

by Dana Lewis

As someone who’s frequently been asked to travel and give talks over the last decade or so, I’ve had an evolving calculation to determine when a trip is “worth” it. This includes assessing financial cost to me (whether accommodations and travel are paid for; whether my time being paid for or not); opportunity cost (if I do this trip, what can’t I do that I would be doing otherwise); relationship and family cost (time away from family); as well as wellness cost (such as jet lag and physical demands of travel during and after a trip).

It’s clearly not a straightforward calculation and it has changed over time. Some things can influence this calculation – for example, if someone is willing to pay for my time and indicate that they value my presence by doing so, I may factor that in as a higher signal of whether this trip might be “worth” it, among the other variables. (And I’ve written previously about all the reasons why people, including patients, should be paid for their time in giving talks and traveling for conferences, meetings, and events, and I still believe this. However, there *are* exceptions that I personally am willing to make regarding payment for my time, but those are unique to me, my situation, my choices, the type of organization or meeting, etc. and I make these exceptions on a case by case basis.)

The pandemic also changed this calculation by adding new variables.

After February 2020, I did not complete any travel for work (including giving talks, attending conferences, etc.) for the rest of the year or in 2021. I was an early voice for interventions for COVID-19 beginning in February 2020, in part because of the risk to the community around me as well as to the risk to myself as someone who has type 1 diabetes. I received a few in-person speaking invitations that I turned down directly, or encouraged them to evolve into virtual events so that I and others could participate safely.

Now, though, it’s becoming clear (sadly) that COVID-19 will be endemic, and although I am not ready to go back to in-person events, many people are, and conferences are increasingly returning and planning to return to in-person physical events moving forward.

And as a result, I see and experience a mismatch in risk tolerance and risk calculations among different groups of people.

For some people, the risk calculation is as simple as considering, “am I fully vaccinated? Then I’m good to go and attend any events and follow whatever regulation or lack of regulation exists for that conference.”

For other people, it is a more complex risk calculation. It may take into account whether they are someone with a condition or chronic illness that puts them at higher risk for severe outcomes, even with COVID-19 vaccination. It may take into account a loved one or family situation where someone close to them is at higher risk. It may take into account that there are different rates of COVID-19 cases, and different rates of vaccination, at their home location compared to the conference location. It may take into account the risk of disruption to their lives if they were to acquire COVID-19 during travel or at the conference and be forced to remain in a different city or country, sick and alone, until they were cleared to travel. That also includes the financial disruption of paying for lodging, changed travel plans, as well as any disruption to home life where childcare or other plans were upended at home while the person was stuck elsewhere.

It is, therefore, much more complicated than “am I vaccinated?” and “does the conference have a protocol?”.

There’s no straightforward answer; there may not be the same answer for everyone in the same situation. Therefore people are also likely to have different risk calculations to make and may arrive at a different decision than you might want them to make.

I hope we can all expand our awareness and recognize that different people have different situations and that the COVID-19 pandemic – still – affects all of us very differently.

New Convening The Center Update – Help Us Find People Who Could Use Internet Scholarships to Do Good In Healthcare?

by Dana Lewis

You may have previously read a blog post about Convening The Center, a RWJF-grant-funded project with the aim of bringing together 25 diverse individuals who are working to change healthcare in nontraditional ways. The main part of the CTC project has finished (more about that soon!), but we also realized that we had a little bit of budget left over from the project, and pitched to RWJF a new plan to use the remaining funds.

We want to give individuals working to make a difference in health and healthcare – and the health of their (online, geographic, or disease) communities – by providing 9 internet scholarships of $1,000 USD each. This is estimated to cover about a year’s worth of internet access for each individual. Individuals who are applying should be able to articulate their past, current, or future efforts as it relates to making a difference in health/care.

There are no strings attached to this ‘internet scholarship.’ You don’t have to do anything particular, or commit to any projects if you’re selected, other than write us a few (say, 250 or so) words within the next year to let us know what it meant to you to have your internet paid for. That’s it. This feedback (which can be given privately to us, or posted publicly – your call) is the only requirement for receiving these funds.

Can you help us find people who could use Internet scholarships to do good in healthcare?

Why are we doing this?

We learned (and re-learned) from working with the cohort from the original CTC project that internet access is something many of us take for granted, and that we shouldn’t. Many of us may assume, from a privileged position, that access to high speed internet is table stakes and that everyone has it, so when invited to take a seat at the table, anyone invited could get there. But that’s not the case.

This is relevant to the space we are working in with CTC, where we are seeking to support patients (people living with diseases) or carers who are working to improve healthcare and their communities, often from non-resourced settings. The ability to afford high-speed internet access therefore might be a barrier for enabling patients/carers to take a seat at the table, when invited – or from building their own table.

We realize that $9,000 won’t solve all the problems of equitable access and facilitate online participation of everyone who needs it. But it’s a start, and could be the thing that makes a difference for 9 individuals, and it’s the best use we can envision for this remaining budget.

So our ask, if you’re reading this:

  • Please consider nominating someone or applying (self-nominating) for the Convening The Center Internet Scholarship, by filling out this Google form by November 14.
  • Please share this blog post (https://bit.ly/CTC-Internet-Scholarships) with your online and offline networks, including with those you know in rural settings where internet cost may be a bigger barrier.

John and I are excited to facilitate this last use of our CTC project budget. We will close the nomination Google form on November 14; select recipients by the end of November; and aim to provide payments of the CTC Internet Scholarships (administered by Trailhead Institute, our fiscal sponsor) in early December (all 2021). Within the next year after we receive feedback from all participants, we will also (anonymously, at an aggregate level) share the feedback and what we learned from using the remaining budget funds for this purpose with the broader community, to help inform others who are looking to create similar initiatives in the future.

In summary:

  • Who: People who are looking to make a difference in health/care who might benefit from having a year’s worth of internet costs covered
  • What: Up to 9 individuals will receive $1,000 USD, estimated to cover a year’s worth of typical high speed internet plans.
  • How: fill out this Google form and nominate yourself or someone else. Multiple nominations are welcome, there is no limit.
  • When: Please apply by November 14, and recipients will be selected in November 2021.

Designing digital interactive activities that aren’t traditional icebreakers

by Dana Lewis

A participant from Convening The Center recently emailed and asked what technology we had used for some of our interactive components within the phase 2 and 3 gatherings for the project. The short answer was “Google Slides” but there was a lot more that went into the choice of tech and the design of activities, so I ended up writing this blog post in case it was helpful to anyone else looking for ideas for interactive activities, new icebreakers for the digital era, etc.

Design context:

We held four small (8 people max) gatherings during “Phase 2” of CTC and one large (25 participants) gathering for “Phase 3”, and used Zoom as our videoconference platform of choice. But throughout the project, we knew we were bringing together random strangers to a meeting with no agenda (more about the project here, for background), and wanted to have ways to help people introduce themselves without relying on rote introductions that often fall back to name, title/organization (which often did not exist in this context!), or similar credentials.

We also had a few activities during the meeting where we wanted people to interact, and so the “icebreakers” (so to speak) were a low-stress way to introduce people to the types of activities we’d repeat later in the meeting.

Technology choice:

I’ve seen people use Jamboard (made by Google) for this purpose (icebreakers or introductory activities), and it was one that came to mind. However, I’ve been a participant on a Jamboard for a different type of meeting, and there are a few problems with it. There’s a limit to the number of participants; it requires participants to create the item they want to put on the board (e.g. figure out how to add a sticky note), and the examples I’ve seen content-wise ended up using it in a very binary way. That in some cases was due to the people designing the activity (more on content design, below), but given that we wanted to also use Google Slides to display information to participants and also enable notetaking in the same location, it also became easy to replicate the basic functionality in Google Slides instead. (PS – this article was helpful for comparing pros/cons of Jamboard and Google Slides.)

Content choices:

The “icebreakers” we chose served a few purposes. One, as mentioned above, was familiarizing people with the platform so we could use it for meeting-related activities. The other was the point of traditional icebreakers, which is to help everyone feel comfortable and also enable people to introduce themselves. That being said, most of the time introductions rely on credentials, and this was specifically a credential-less or non-credential-focused gathering, so we brainstormed quite a bit to think of what type of activities would allow people to get comfortable interacting with Google Slides and also introduce themselves in non-stressful ways.

The first activity we did for the small groups was a world map image and asked people to drag and drop their image to “if you could be anywhere in the world right now, where would you be?”. (I had asked all participants to send some kind of image in advance, and if they didn’t, supplied an image and told them what it was during the meeting.) I had the images lined up to the side of the map, and in this screenshot you can see the before and after from one of the groups where they dragged and dropped their images.

Visual of a world map with images representing individuals and different places they want to be in the world

The second activity was a slide where we asked everyone to type “one boring or uninteresting fact about themselves”. Again, this was a push back against traditional activities of “introduce yourself by credentials/past work” that feels performative and competitive. I had everyone’s names listed on the slide, so each could type in their fact. It ended up being a really fun discussion and we got to see people’s personalities early on! In some cases, we had people drop in images (see screenshot of example) when there was cross-cultural confusion about the name of something, such as the name of a vegetable that varies worldwide! (In this case, it was okra!)

List of people's names and a boring fact about themselves

We also did the same type of “type in” activity for “Ask me about my expertise in..” and asked people to share an expertise they have personally, or professionally. This is the closest we got to ‘traditional’ introductions but instead of being about titles and organizations it was about expertise in activities.

Finally, we did the activity most related to our meeting that I had wanted people to be comfortable with dragging and dropping their image for. We had a slide, again with everyone’s image present, and a variety of types of activities listed. We queried participants about “where do you spend most of your time now?”. Participants dragged and dropped their images accordingly. In some cases, they duplicated their image (right click, duplicate in Google Slides) to put themselves in multiple categories. We also had an “other” category listed where people could add additional core activities.

Example of slide activity where people drag their image to portray activities they're doing now and want to do in the future

Then, we had another slide asking where do they want to spend most of their time in the future? The point of this was to be able to switch back and forth between each slide and visualize the changes for group members – and also so they could see what types of activities their fellow participants might have experience in.

Some of these activities are similar to what you might do in person at meetings by “dot voting” on topics. This type of slide is a way to achieve the same type of interactivity digitally.

Facilitating or moderating these types of interactive activities

In addition to choosing and designing these activities, I also feel that moderating or facilitating these activities played a big role in the success of them for this project.

As I had mentioned in the technology choice section,  I’ve previously been a participant in other meeting-driven activities (using Jamboard or other tech) where the questions/activities were binary and unrelated to the meeting. Questions such as “are you a dog or cat person? Pick one.” or “Is a hot dog a sandwich?” are binary, and in some cases a meeting facilitator may fall into the trap of then ascribing characteristics to participants based on their response. In a meeting where you’re trying to use these activities to create a comfortable environment for participation amongst virtual strangers…that can backfire and actually cause people to shut down and limit participation in the meeting following those introductory activities.

As a result of having been on the receiving end of that experience, I really wanted to design activities with relevance to our meeting (both in terms of technology used and the content) as well as enough flexibility to support whatever level of involvement people wanted to do. That included being prepared to move people’s images or type in for them, especially if they were on the road and not able to sit stationary and use google slides. (We had recommended people be stationary for this meeting, but knew it wasn’t always possible, and were prepared to still help them verbally direct us to move their image, type in their fact, etc. This also can be very important for people with vision impairment as well, so be prepared to assist people in completing the activities for whatever reason, and also to verbally describe what is going on the slides/boards as people move things or type in their facts. This can aid those with vision impairment and also those who are on the go and can’t look at a screen during the meeting for whatever reason.)

One other reason we used Google Slides is so we’d end up with a slide for each breakout group to be able to take notes, and a “parking lot” slide at the end of the deck for people to add questions or comments they wanted to bring back up in the main group or moving forward in future discussions. Because people already had the Google Slide deck open for the activity, it was easy for them to scroll down and be in the notetaking slide for their breakout group (we colored the background of the slides, and told people they were in the purple, blue, green, etc. slides to make it easier to jump into the right slide).

One other note regarding facilitation with Zoom + Google Slides is that the chat feature in Zoom doesn’t show previous chat to people who join the Zoom meeting after that message is sent. So if you want to use Zoom chat to share the Google Slides link, have your link saved elsewhere and assign someone to copy and paste that message into the chat frequently, so all participants have access and can open the URL as they join the meeting. (This also includes if someone leaves and re-enters the meeting: you may need to re-post the link yet again into chat.)

—

TLDR, we used Google Slides to facilitate meeting note taking, digital “dot voting” and other interactive icebreaker activities alongside Zoom.

What I wanted to know when I started eating a low FODMAP diet, resources for a low FODMAP diet, and what to explain to family and friends about the FODMAP diet

by Dana Lewis

As part of my pandemic “fun” (but fortunately not from COVID-19 infection, which I’ve avoided), I developed some gastrointestinal dysbiosis. Gastrointestinal dysbiosis generally means microbiome dysfunction of some kind, hypothetically caused by a loss of ‘good’ bacteria and getting out of balance with ‘bad’ bacteria. I don’t have a diagnosable disease such as IBS (that and many other things were ruled out through a variety of medical testing), but I definitely have some dysfunction going on causing varying levels of GI symptoms now for almost a year and a half. At their worst, I was waking up overnight suddenly with sharp abdominal pain out of the blue – scary! At their least annoying, it was excess gas and general abdominal discomfort after eating. It ebbed and flowed and did not seem to be traceable to any particular cause. After several months, I consulted a gastroenterologist and did an assortment of tests over the course of ~10 months, slowed down by the pandemic and my reluctance to do in-person clinical tests until I was fully vaccinated against COVID-19 (we checked for c-diff and inflammation among other blood tests, did a CT scan, and eventually did a colonoscopy and endoscopy). The test results all came back normal. Eventually, we decided on a treatment plan that involved an antibiotic to kill excess bacteria in my small intestines. That worked – for about two weeks – and then my symptoms returned. I needed another solution, and before I went back to my gastroenterologist to talk about more extreme options, I decided first to self-test a low FODMAP diet.

(As a note to those who don’t know – I have had type 1 diabetes for almost 19 years, and celiac disease for about 13 years. As a result, I’ve been 100% fastidiously gluten free for 13 years and already eating a gluten free diet. P.S. I’m not a doctor and nothing in this post or this blog is medical advice.)

Header image: What I wanted to know about starting a low FODMAP diet and how I explain low FODMAP to family and friends

What a low FODMAP diet means in simplified terms

FODMAP is an acronym for different groups of short-chain carbohydrates, or sugars, that can cause symptoms for some people when they eat them, because the small intestine absorbs them poorly. FODMAP stands for fermentable oligosaccharides, disaccharides, monosaccharides and polyols.

The FODMAP diet is often discussed in the context of IBS (one particular condition), but it can be used by people with a variety of gut dysbiosis issues, many of whom (like me) don’t necessarily have a diagnosable condition or disease.

One reason I decided to try a low FODMAP diet is because I had identified onion and garlic as potential food-related triggers or variables that correlated with some of the worst of my symptoms. I began attempting to eliminate onion and garlic (and then onion powder and garlic powder) from my diet from January 2021-May 2021. It helped, but I was still having varying levels of symptoms.

Generally, people who describe being on a low FODMAP diet are referring to the first step of a three-step or three-phase diet. The first step is eliminating the major sources of FODMAPs. Then, a careful re-introduction process takes place to “test” and see which of the groups of FODMAPs you react to, and in what amounts. With that knowledge, the third phase is then eating what you’re willing to eat based on your knowledge of what FODMAPs bother you and what you’re willing to tolerate symptom-wise.

What most people don’t realize at first is that the amount of FODMAP and type of FODMAP matter, in each of the phases.

For example, there are a lot of blog posts and lists that will describe things that are “low FODMAP”. And they are partially right, but they leave out specifications that if you eat too many of them, the FODMAP amount may be considered “high” (meaning likely to trigger symptoms). Additionally, you can eat multiple things with the same type of FODMAP and cause FODMAP stacking, meaning you cumulatively have too much of the group of FODMAP and can cause symptoms, even if you ate the “right” low FODMAP portion of each individual food. Sometimes eating the same group within a short period of time can cause stacking, and so spreading them out 3-4 hours apart (or longer) could help reduce the effect.

(P.S. If you are looking for a simplified explanation to share with family and friends, skip to the bottom of the post!)

Resources for getting started with low FODMAP diet and some pros and cons to each

There are many blogs out there that will describe FODMAPs and the process of FODMAP elimination pretty well. Many have short lists of examples of foods that are “high FODMAP” and to avoid. The challenge, as I mentioned, is that the amount of food matters and knowing the type of FODMAP it contains really helps. There are many “high FODMAP” foods that you can eat in small quantities, and it’s also possible that you can eat large quantities of “low FODMAP” foods and accidentally stack FODMAPS from the same group and cause symptoms. With this diet and process, knowledge is power (even though it is very annoying to have to read ingredient labels and super sleuth everything you eat…).

There are several lists or spreadsheets of low FODMAP foods. Here is one that I found that is freely available. It lists the ingredient, it’s “max use”, and has information about the FODMAP group. This is information pulled from the Monash app and may be out of date – same with many blog posts or online lists you might find, such as this one!

How I used many of these free lists and blog posts was to get a sense of “green” or “low FODMAP” foods. There are a few types of foods that are really “free” meaning you can eat as much as you want because they don’t contain any level of FODMAP, so they shouldn’t affect you regardless of the quantity you eat. I first made a list of these “free” foods (I’m probably pulling this “free” terminology from early-2000-era diabetes food terminology) that I actually like and want to eat. For example, for me, this was eggs, grits, carrots, baby corn, peanuts, most cheese, and popcorn. This is what I ate for the first handful of days while I was doing my research on what else would constitute a low FODMAP diet. It sounded and felt restrictive, but thankfully as I learned more I realized that I could eat a lot more things and a better diversity of things.

The next app/tool that helped was the Monash app. One caveat – it costs money. I waited a few weeks before I finally caved and paid $8 USD for it. The reason I finally decided to get it (vs using tools like that spreadsheet above and other places that have information from Monash available) is I wanted the quick visual glance the app has about whether the food is completely low FODMAP and ‘free’ to eat (e.g. carrots, eggs) or low FODMAP in certain portion sizes, or pretty much high FODMAP no matter what. Monash is a university in Australia that does most of the research and testing on FODMAPs in foods, so I decided paying for the app was a way to invest in the research that I’m clearly benefiting from.

Example from Monash's app showing different color orders
Example from Monash’s app showing different color orders

I do have some frustrations with the Monash app, though. It only includes foods that they’ve happened to measure…which is a good amount, but not as many as I’d like. It also confusingly sometimes lists the different serving sizes in opposite order. For example, there might be a “green” overall rating, with a certain portion size indicated in green but also showing the yellow/amber “moderate” amount portion size alongside the red “high” portion size, so you can see the difference. However, sometimes they list the portion size in opposite directions. This search for bananas is a good example – the color indicators on “Banana, sugar (ripe) goes red-amber-green; the color indicators on “Banana, common (unripe)” goes green-amber, and the color indicators on “Banana, common (ripe)” goes red-amber-green again.

Their rationale for this is that standard serving size and traffic light rating will always be the first traffic light so foods may start green and go red as serving sizes increase or start red and become green with smaller servings. However, it means as a user that you have to pay close attention to the order and serving sizes and it’s not the same across the app.

You also have to pay attention to the tiny, grey text at the bottom below the individual ratings. The text isn’t the same from item to item. For example, peanuts are marked as green, no other color rating. When you click to see the details, it shows a portion size of 32 nuts (0.99 ounce), and the text indicates the portion only contains trace amounts of FODMAPs and “eat freely according to appetite”. Same for carrots, so these are what would constitute a “free” food where you don’t have to worry about FODMAP stacking.

However, when you look at pecans, it also has a green overall rating. But the serving size is 10 pecan halves (0.71 ounce) and the grey text indicates that “Large servings (40 pecan halves or 100g/3.5oz) contains moderate amounts of the Oligos-fructans and intake should be limited.”

Example of Monash's app showing peanuts as the result
Example of Monash’s app showing peanuts as the result
Example of Monash's app showing pecans as the result
Example of Monash’s app showing pecans as the result
Example of Monash's app showing the search result with peanuts and pecans
Example of Monash’s app showing the search result with peanuts and pecans

 

This means you can’t just eyeball the app and take the green overall traffic light rating, even if it just has a green overall rating and doesn’t have the additional lights (like under the bananas) indicating warnings about different portion sizes. The warnings about portion sizes may be hidden in the grey text that your brain doesn’t want to read because it assumes the text is always the same.

(The other thing I don’t love about the Monash app is that it’s language is very IBS focused. But there’s a lot of people using low FODMAP for non-IBS reasons, so you can mostly ignore that. It has other tools like a diary for symptoms and food intake and a re-introduction tracker for when you do re-challenges of FODMAPs.)

Another app resource is an app called “Spoonful”. It’s free: although you can pay something like $2.99 for a premium version, the free capabilities suit my purpose. You can scan a barcode or type and search for store-bought products, which is a great use case for me since I don’t cook a lot from scratch. It has different color coding (and you can limit your search to a color type) for whether a given food has low, moderate or high FODMAPs in one serving. It’s supposed to be dietitian-reviewed and approved. It’s good for gut-checking your interpretation of an ingredient label, but there’s a caveat that I’ve found several inconsistencies within the app (and already flagged and reported them). For example, I spotted a chip that was sour cream and onion and supposedly low (green rating) FODMAP *and* cited as officially certified as low FODMAP. Except…it has onion powder as a major ingredient and I am not sure it could be considered low FODMAP. (What I think happened is that Australia’s version of the company has a sour cream and chive chip that looks pretty similar and is certified low FODMAP, and they accidentally swapped them within the app.) I reported that one, and they were quick to fix it within days, so it  is now correctly marked as high FODMAP. In another search I did, milk and milk related products are flagged in one flavor of a food (e.g. an ice cream bar), but a slightly different flavor that’s still the same ice cream doesn’t have the milk ingredients flagged and has a completely different color rating as a result with those ingredients not flagged (in the same quantities). A third type of error I have found is that you can scan a barcode of a product, and the labeled ingredients listed in the app do not match the ingredients currently on the package – it’s pulling from a stored list of ingredients that could be outdated. So as a user, you have to eyeball and make sure the app listed ingredients matches the ingredients on the product in your hand, then compare any potential FODMAP-containing ingredients that are either flagged in the app or might be in your hand but not listed on the app, if those ingredient labels differ.

Hypothetically these are medium or small errors, but given the number of errors like that where they inconsistently flag ingredients across the same type of food item that result in variable color ratings, I would not rely just on their color rating and instead double check the ingredients yourself (including comparing them to the version you are holding in your hand). If you’re as sensitive to FODMAPs as I am, it’s worth double checking and thinking it through each time.

Additionally, the Spoonful app (as of August 2021) only supports one diet filter search at a time. Thankfully, I’ve had celiac forever and am comfortable knowing how to also determine if something is gluten free or not. So it’s not a big deal for me to “just” use the low FODMAP search to see what’s FODMAP-y or not, with the above caveats. But low FODMAP does not mean gluten free, even though some wheat-related items are high FODMAP, so do not use anything that’s low FODMAP as an indicator that it’s celiac-safe!

As another way of checking things out, it’s always helpful to google “Ingredient name FODMAP” or “Food name FODMAP” – often there are blog posts discussing the food type, or Reddit or similar forum posts discussing individuals’ experiences with that ingredient or food type.

However, one more important thing to keep in mind: it may be “low FODMAP” or “no FODMAP”, and it can still cause symptoms. Everyone is different, and that’s the point of needing to re-challenge each group to determine what groups bother you, and in what quantities. Additionally, some no-FODMAP foods or ingredients could be bothersome, and it has nothing to do with FODMAPs. For example, I noticed Crystal Light was bothering me last year and stopped drinking it. After I did the first phase of low FODMAP (the elimination phase) for a few weeks, I decided to test Crystal Light since it’s theoretically not containing FODMAP ingredients. However, it definitely caused symptoms that weren’t attributable to anything else, so it’s on my “don’t drink” list, just like onion soup would be, even though Crystal Light isn’t considered to have FODMAPs.

So how exactly do you do the different FODMAP diet phases?

Most everything I read online said the first phase, the elimination phase where you eat 100% low FODMAP, should be around 2-6 weeks. Another piece of data was that many dietitians recommend having 5-7 symptom-free days before starting food re-challenges (e.g. the second or next phase).

If you’re like me, you might get accidentally FODMAP’ed, as I call it, or experience FODMAP stacking by accident within your first few weeks as you work out the correct portion sizes of things and when to eat them. My rule of thumb was aiming for 2 weeks overall on the elimination/first phase, but also going for several days without symptoms so I had a “clean slate”, so to speak, before starting the challenges. I am lucky, relatively speaking, that I don’t have the major symptoms that most people with IBS who do FODMAP seem to experience – I don’t have diarrhea or constipation or that spectrum to deal with. My symptoms are usually noticeable immediately or within 12 hours, but they also resolve pretty quickly, so I can see the correlation between what I eat and the results fairly easily. As a result, I went a little more than 2 weeks attempting to do full low FODMAP elimination, had an extra few days added on due to some accidental FODMAP stacking, before I began my first “challenge” food.

The challenge foods should be ones that only contain one of the FODMAP groups. If you pick something that has multiple FODMAP groups, it’ll be hard to tell which FODMAP you’re reacting to or if it’s the stacking effect. I started with lactose (because I’m pretty confident already that I’m not lactose intolerant and it’s not an issue group for me) because it’s an easy one to start and cross off my list. The others I’ve personally decided to use as my test foods are cashews (Fructan+GOS); Apple (Fructose+Sorbitol); Raisins (Fructan: veggie & fruits); Almonds (GOS); Honey (Fructose); Sweet Potato (Mannitol); and Peach (Sorbitol).

Because I have celiac disease, I am of course skipping wheat bread and wheat pasta (Fructan: grain foods). I’m also skipping the separate fructan test for onions and garlic because I know I react to those and have already reverse-tested eliminating those in the past year. I might eventually test onion powder and garlic powder, but I’m de-prioritizing those to be after I test most of the others.

(The Monash app in the reintroduction section has several foods recommended for each group and the amounts for each, so that’s a good resource for selecting some of the challenge foods).

Two schools of thought for re-challenging: you can do day 1, 2, and 3 in a row with the increasing amount prescribed, or you can do every other day with a “washout” (e.g. fully low FODMAP) day in between. If you have moderate to major symptoms, you stop and have 3 washout days before you proceed with the next test. It’s up to you to decide what symptoms are tolerable and whether you proceed or cross that group off your list (for now). You can always come back and re-challenge or re-test groups or food at any time.

Finally, the third phase is what you get to when you’ve done all your testing and have an idea of what FODMAP groups are irritants or triggers, which foods as a result you want to avoid or continue to experiment with. Ideally, you arrive at a more diverse diet than the full elimination stage of low FODMAP. (Again, I’m not a doctor or dietitian, and I’m DIY-ing my low FODMAP experience, and these are all the conclusions I’ve arrived at after copious reading online and in the medical literature.)

What do you tell family and friends about the low FODMAP diet?

It depends, especially on what your lifestyle is and what stage of the diet that you are at (and also if you’re in a global pandemic which limits your eating-out options).

Because this experience has been during a global pandemic, I am no longer eating out at restaurants (to avoid being unmasked around strangers) which made things easier in the sense that I didn’t have to try to figure out low FODMAP restaurant options. But it was harder because I couldn’t even get gluten free takeout or delivery food anymore, and now have to make all my food myself. For the few social food situations I had with my in-laws (we are all fully vaccinated and use antigen testing to make sure we aren’t infectious on the days we visit in person), I have mostly decided to take my own food. I’ve stashed a few things in the freezer and pantry at their house to be able to make a meal and just let everyone else do takeout without me, so that we can all still sit down together for a meal. I have described what I’m doing and what it entails (such as avoiding onion and garlic and only eating particular things in particular amounts), but it’s hard to describe to most people at a high level because of the complexity of the types of foods (it seems random unless you think about the biochemistry) and the quantities. It makes me nostalgic for explaining only celiac to people, because “gluten free” is a much smaller category of ingredients to watch for and avoid, compared to FODMAPs and FODMAP quantity specifics. That being said, already being gluten free means I’m experienced at reading ingredient labels and have a head start on excluding some of the major FODMAP groups (fructan grain foods are usually gluten) and don’t have to (well, don’t get to) re-test those.

A friend recently said (because she’s amazing) that she wanted to read up on what a low FODMAP diet means, and I couldn’t find a good high level simple article to send to her, so I had to type up an explanation. So what I have summarized to her and family and other friends is this:

  • I have GI dysbiosis where I react to a lot of what I’m eating. I’m experimenting with a low FODMAP diet, which starts with a partial elimination diet to restrict the types of FODMAPs that I eat. FODMAPs are certain types of carbs that don’t digest well. During this stage, I’m avoiding things like onion, garlic, certain sweeteners, many fruits, and more. Even small amounts of these ingredients can make me feel bad, just like gluten, although they cause shorter term symptoms. What I can eat freely are plain meat and protein including eggs; vegetables like cucumbers, carrots, potatoes, and baby corn; and cheese, among other things. I need to check the ingredients on everything I eat, even things that we know are already gluten free.
  • Eventually, I will begin to “test” my response to the FODMAP foods. I’ll still be carefully managing what I eat while I do these tests so that I have a “clean slate” to see how my body responds to the type and quantity of each food. My hope is to be able to add some of the food groups back into my diet, but it may be only restricted amounts. It will be several months before I progress through all the tests.
  • I can use your support – I’m looking for low FODMAP alternatives to foods like X, Y, and Z, so if you’d like to help, in addition to listening to me vent, you could help me research some store-bought or homemade alternatives to these.

(One reason I add the “I can use your support” aspect for some people, which is obviously optional – I learned from being gluten free with celiac that having friends and family aware of what it takes to eat and find safe gluten-free options really cut down on the emotional labor required to find and suggest food every time. People try to be nice and let me offer gluten free options for eating out, but that means I have to do a lot of research every time. Having family members put the “Find Me Gluten Free” app on their phone and teaching them how to do basic searches so they could offer up suggestions, too, made a big difference. I won’t ask everyone for help re: FODMAP but for certain family members, they really can make a difference in doing some of the searching for low FODMAP alternatives to certain things that I haven’t been able to find yet! For me, this is things like finding a low FODMAP steak sauce that I could buy. I still haven’t found one. Thankfully, there’s also brands like Fody where I buy a lot of sauces (BBQ sauce, spaghetti sauce, ketchup) and salad dressings – plus now they have tasty BBQ chips that are also gluten free, and meal delivery services like Epicured that I’ve tried. Note – I am not sponsored or paid by either of those brands, I shell out my own money for them!)

Mad-lib style fill in the blank template to customize telling family and friends about your FODMAP experience. It's the same text in the above personal description without the personal examples of food I like to ea.
Example fill in the blank script to customize to help you explain your FODMAP experience to family and firends

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At the end of the day, the one thing you need to know about FODMAP is that everyone is different. Literally, you are a scientific experiment of one. What works for someone else doesn’t necessarily work for you. You know you, and you get to decide what level of symptoms you are willing to tolerate – or not – in response to different quantities of food. Whether it’s IBS, small intestinal bacterial overgrowth (SIBO), some other condition, or general gastrointestinal dysbiosis, a low FODMAP diet may be one option that you can try and see if it helps you feel better. In diabetes, we often say “YDMV”, meaning ‘your diabetes may vary’. In the landscape of GI-related stuff, I think it’s “YFWV”, meaning “your FODMAP experience will vary.”

Everything I did wrong (but did anyway) training for a marathon after a broken ankle and marathon running with type 1 diabetes

by Dana Lewis

This is another one of those posts for a niche audience. If you found this post, you’re likely looking for information about:

  • Running after a broken ankle (or are coming from my “tips for returning to weight bearing” and looking for an update from me, two years after my trimalleolar ankle fracture)
  • Running with the “Galloway method”, also known as run-walk or run/walk methods for marathon or similar long distances – but with information about run-walking for slow runners.
  • Running a marathon with type 1 diabetes, or running an ultra with type 1 diabetes
  • Running a marathon and training for a marathon and going without fuel or less fuel
    *Update: also running an ultramarathon with the same methods (less fuel than typical)!

There’s a bit of all of this in the post! (But TLDR – I ran my marathon (finally), successfully, despite having a previously broken ankle. And despite running it with type 1 diabetes, I had no issues managing my blood sugars during even the longest training runs, even with significantly less fuel than is typically used by marathon runners. I also ran a 50k ultra using the same methods!)

running a marathon after a broken ankle and with type 1 diabetes

First up, some context that explains why I chose run-walking as my method of running a marathon (as that also influences fueling choices) and what it is like to be a slow marathon runner (6 hour marathon ish). I broke my ankle in January 2019 and began running very tiny amounts (literally down the block to start) in summer 2019. I progressed, doing a short run interval followed by a walk interval, increasing the total numbers of intervals, and then slowly progressing to extend the length (distance and/or time) of the running intervals. In early fall 2019, I was attempting a couch-to-5k type program where I would extend my running intervals even longer, but I still had subsequent injuries (a very stubborn big toe joint, then intermetatarsal bursitis in TWO spots (argh)) that made this not work well. Eventually, I went back to running 30 seconds and walking 30 seconds, then keeping those “short” intervals and extending my run. I focused on time at first: going from 5 to 10 to 15 to 20 etc minutes, rather than focusing on distance. Once I built up to about 30 minutes of run-walking (30:30, meaning running 30 seconds and walking 30 seconds), I switched to adding a quarter or half mile each time depending on how I was feeling. But doing 30:30 seemed to work really well for me in terms of the physical impact to my feet, even with long miles, and also mentally, so I stuck with it. (You can go read about the Galloway run-walk-run method for more about run-walking; most people build up to running more, say 5 minutes or 8 minutes followed by a minute of walking, or maybe run 1 mile and then walk for a minute, or walk through the aid stations, but I found that 30:30 is what I liked and stuck with it or 60:30 as my longest intervals.)

This worked so well for me that I did not think about my right ankle a single time during or after my marathon! It took days to even remember that I had previously broken my ankle and it could’ve been problematic or weaker than my other ankle during my marathon. It took a long time to get to this point – I never thought I’d be forgetting even for a few days about my broken ankle! But two years later, I did.)

When COVID-19 struck, and as someone who paid attention early (beginning late January 2020), I knew my marathon would not be taking place in July 2020 and would be postponed until 2021. So I focused on keeping my feet healthy and building up a running “base” of trying to stay healthy feet-wise running twice a week into fall 2020, which worked fairly well. At the start of 2021, I bumped up to three runs a week consistently, and eventually began making one run every other a week longer. My schedule looked something like this:

Monday – 3 miles  Wednesday – 3 miles   Friday – 3 miles

Monday – 4 miles  Wednesday – 3 miles   Friday – 3 miles

Monday – 5 miles  Wednesday – 3 miles   Friday – 3 miles

Monday – 6 miles  Wednesday – 3 miles   Friday – 3 miles

Monday – (back to) 3 miles  Wednesday – 3 miles   Friday – 3 miles

Monday – 8 miles  Wednesday – 3 miles   Friday – 3 miles

Monday – (back to) 3  miles  Wednesday – 5 miles   Friday – 4 miles

Monday – 10 miles  Wednesday – 3 miles   Friday – 3 miles

Note that these runs I refer to were all technically run-walks, where I ran 30 seconds and walked 30 seconds (aka 30:30) until I covered the miles. I was running slow and easy, focusing on keeping my heart rate below its maximum and not worrying about speed, so between that and run-walking I was often doing 15m30s miles. Yes, I’m slow. This all enabled me to build up to safely be able to run 3 runs weekly at first, and then eventually progressed to adding a fourth run. When I added a fourth run, I was very conservative and started with only 1 mile for two weeks in a row, then 2 miles, then up to 3 miles. Eventually, later in my training, I had some of my other runs in the week be a bit longer (4-5 miles) in addition to my “long” run.

But, because I’m so slow, this means it takes a lot of time to run my long runs. If you estimate a 15-minute mile for easy math, that means an 8 mile “long” run would take at least 2 hours. With marathon training (and my goal to train up to multiple 22-24 mile runs before the marathon), that took A LOT of time. And, because of my broken ankle and intermetatarsal experiences from 2019, I was very cautious and conservative about taking care of my feet during training. So instead of following the usual progression of long runs increasing 2-3 weeks in a row, followed by a “cutback” long week, after I hit two hours of long running (essentially 8 miles, for me), I started doing long runs every other week. The other week was a “cutback” long run, which was usually 8 miles, 10 miles (for several weeks), up to eventually 12-14. In terms of “time on feet”, this meant 2-3 hours “cutback” long runs, which according to many people is the max you should be running for marathon training. That doesn’t quite work for slow runners such as myself where you might be doing a 6-hour marathon or 7-hour marathon or thereabouts. (The standard advice also maybe doesn’t apply when you are doing run-walking for your marathon training.)

I had ~6 months to build up to my marathon (from January to the end of July), so I had time to do this, which gave me a buffer in my overall training schedule in case of scheduling conflicts (which happened twice) and in case of injury (which thankfully didn’t happen). I ended up scheduling training long runs all the way to full marathon distance (26ish miles), because I wanted to practice my fueling (especially important for type 1 diabetes marathon runners, which I’ll talk about next) as well as get my feet used to that many hours of run-walking. I did my long runs without care for speed, so some of them were closer to 16-minute mile averages, some were around 15-minute mile averages for the entire run, and the day I ran the full marathon course for training I ended up doing 16+ minute miles and felt fabulous at the end.

I ended up doing a few “faster” “shorter” long runs (on my cutback weeks), where I would do a half marathon-ish distance on the actual marathon course (a public trail), and try to go faster than my super slow long run pace. I had several successful runs where I was at or near marathon pace (which for me would be around 13m30s). So yes, you can train slow and run fast for a marathon, even without much speed work, and even if you are doing a run-walk method, and even if you’re as slow as I am. Running ~15-minute miles took forever but kept my feet and body healthy and happy through marathon training, and I was still able to achieve my sub-6 hour marathon goal (running 13:41 average pace for 26.2+ miles) on race day.

Now let’s talk about fueling, and in particular fueling for people with type 1 diabetes and for people wondering if the internet is right about what fueling requirements are for marathon runners.

I previously wrote (for a T1D audience) about running when fasted, because then you don’t have to deal with insulin on board at the start of a run. That’s one approach, and another approach is to have a smaller meal or snack with fewer carbs before the run, and time your run so that you don’t need to bolus or inject for that meal before you start your run. That’s what I chose for most of my marathon training, especially for longer runs.

On a typical non-running day, I would eat breakfast (½ cup pecans, ¼ cup cranberries, and a few sticks of cheese), my OpenAPS rig would take care of insulin dosing (or I could bolus for it myself), and my BGs would be well managed. However, that would mean I had a lot of insulin on board (IOB) if I tried to run within an hour of that. So instead, during marathon training, I ended up experimenting with eating a smaller amount of pecans (¼ cup) and no cranberries, not bolusing or letting OpenAPS bolus, and running an hour later. I had a small BG rise from the protein (e.g. would go from 100 mg/dL flat overnight to 120-130 mg/dL), and then running would balance out the rest of it.

I generally would choose to target my blood sugar to 130 mg/dL at the start of long runs, because I prefer to have a little bit of buffer for if/when my blood sugar began to drop. I also figured out that if I wasn’t having IOB from breakfast, I did not need to reduce my insulin much in advance of the run, but do it during the duration of the run. Therefore, I would set a higher temporary target in my OpenAPS rig, and if I was doing things manually, I would set a temporary basal rate on my insulin pump to about ⅓ of my usual hourly rate for the duration of the run. That worked well because by the time the beginning of my run (30-45 minutes) brought my BG down a little bit from the start with the protein breakfast bump (up to 130 mg/dL or so), that’d also be when the reduced insulin effect would be noticeable, and I would generally stay flat instead of having a drop at the beginning or first hour of my run.

After my first hour or so, I just kept an eye periodically on my blood sugars. My rule of thumb was that if my BG drifted down below 120 mg/dL, I would eat a small amount of carbs. My carb of choice was an individually wrapped peppermint (I stuffed a bunch in my pocket for the run) that was 3-4g of carb. If I kept drifting down or hadn’t come back up to 120 mg/dL 10-15 minutes later, I would do another. Obviously, if I was dropping fast I would do more, but 75% of the time I only needed one peppermint (3-4g of carb) to pause a drift down. If you have a lot of insulin on board, it would take more carbs, but my method of not having IOB at the start of long runs worked well for me. Sometimes, I would run my entire long run with no carbs and no fuel (other than water, and eventually electrolyte pills). Part of this is likely due to the fact that I was run-walking at such low intensity (remember 15-ish minute miles), but part of this is also due to figuring out the right amount of insulin I needed for endurance running and making sure I didn’t have excess insulin on board. On my faster runs (my half marathon distance fast training runs, that were 2+ minutes/mile faster than my slow long runs) and my marathon itself, I ended up needing more carbs than a super slow run – but it ended up being about 30 grams of carbohydrate TOTAL.

Why am I emphasizing this?

Well, the internet says (and most coaches, training plans, etc) that you need 30g of carbs PER HOUR. And that you need to train your stomach to tolerate that many carbs, because your muscles and brain need it. And without that much fuel, you will ‘hit the wall’.

My hypothesis, which may be nuanced by having type 1 diabetes and wearing a CGM and being able to track my data closely and manage it not only by carbs but also titrating insulin levels (which someone without diabetes obviously can’t do), is that you don’t necessarily need that many carbs, even for endurance running or marathon running.

I’m wondering if there’s a correlation between people who max out their long runs around 16-20 miles and who then “hit the wall” around mile 20 of a marathon. Perhaps some of it is muscle fatigue because they haven’t trained for the distance and some of it is psychological of feeling the brain fatigue.

During my marathon, in which I ran 2+ min/mi faster than most of my training runs, I did not ever experience hypoglycemia, and I did not “hit the wall”. Everything hurt, but I didn’t “hit the wall” as most people talk about. Those might be related, or it might be influenced by the fact that I had done a 20, 22, 24, 26, and another 21 mile run as part of my training, so my legs were “used” to the 20+ mile distance?

So again – some of my decreased fueling needs may be because I was already reducing my insulin and balancing my blood sugars (really well), and if my blood sugar was low (hypoglycemia), I would’ve needed more carbs. Or you can argue my lower fueling needs are because I’m so slow (15-16 minute mile training runs, or a 13m40s marathon pace). But in any case, I wanted to point out that if the fueling advice you’re getting or reading online seems like it’s “too much” per hour, there are people who are successful in hitting their time goals and don’t hit the wall on lower fueling amounts, too. You don’t necessarily have to fuel for the sake of fueling.

Note that I am not doing “low carb” or “keto” or anything particular diet-wise (other than eating gluten-free, because I also have celiac disease) outside of my running fuel choices. This was a successful strategy for me, and I eat what might be considered a moderate carb diet outside of running fuel choices.

Ps – if you don’t fuel (carbs or other nutrients) during your runs, don’t forget about your electrolytes. I decided to keep drinking water out of a Camelbak in a running pack, rather than filling it with Gatorade or a similar electrolyte drink, but I’m pretty electrolyte sensitive so I needed to do something to replace them. I got electrolyte pills and would take them every 30 minutes or so on long training runs when it was hotter. Play around with timing on those: if you don’t sweat a lot or aren’t a salty sweater, you may not need as many as often. I ended up doing the bulk of my long runs on hot days, and I sweat a lot, so every 30 minutes was about right for me. On cooler runs, one per hour was sufficient for me. (I tried these chewable tabs in lemon-lime but didn’t like the salt feeling directly in my mouth; I ended up buying these to swallow instead: I didn’t have any digestion issues or side effects from them, and they successfully kept my electrolytes to manageable levels. The package says not to take more than 10 within a 24 hour period, but I ended up taking 12 for my longest training run and the marathon itself and suffered no ill effects. It’s probably set to max 10 because of the amount of salt compared to the typical daily amount needed..but obviously, if you’re doing endurance running you need more than the daily amount of salt you would need on a regular day. But I’m not a doctor and this isn’t medical advice, of course – I’m just telling you what I chose to do).

In terms of training, here’s everything the internet told me to do for marathon training and everything I did “wrong” according to the typical advice:

  • Your long run should be 20-30% of your overall weekly mileageWhat I did: Sometimes my long runs got up to 70% of my weekly mileage, because I was only running 3 and then 4 days a week, and not doing very long mid-week runs.
  • Have longer mid-week runs, and build those up in addition to your true long runWhat I did: I did build up to a few 5-6 mile mid-week runs, but I chose consistency of my 4 runs per week rather than overdoing it with mid-week medium runs
  • Run 5-6 days a weekWhat I did: Only run 4 times a week, because I wanted a rest day after each run, and wanted a rest day prior to my longest run. I ran Monday, Wednesday, Friday, then added Saturday short runs. Monday was my long run (because I have the benefit of a flexible schedule for work).
  • Get high mileage (start from a base of 30-40 miles a week and build up to 50-60 miles!)What I did: I started with a “base” of 10 miles a week with two runs that I was very proud of. I went to three runs a week, and then 4. My biggest running week during training was 40.55 miles, although they were all 20+ mile weeks (long or cutback weeks) after the first two months of training.
  • Do progressively longer long runs for two or three weeks in a row and then do one cutback week, then continue the progressionWhat I did: Because of the time on my feet cost of being a slower runner, I did an every-other-week long-run progression alternating with a shorter cutback week.
  • Long run, tempo run, speed work, etc. plus easy runs! All the things each week!What I did: a long run per week, then the rest of my runs were usually easy runs. I tried a handful of times to do some “speed” work, but I often time was trying to keep my feet from being injured and it felt like running faster caused my feet to be sore or have other niggles in my legs, so I didn’t do much of that, other than doing some “cutback” long runs (around half marathon distance, as well as my last 21-mile run) at close to marathon pace to get a feel for how it felt to run at that pace for longer.

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TLDR, again:

I signed up for a marathon in fall 2018 planning to run it in July 2019 but was thwarted by a broken ankle in January 2019 and COVID-19(/20) for 2020, so I ultimately trained for and ran it in July 2021. I am a slow runner, and I was able to achieve my sub-6 hour marathon goal using run-walk and without causing additional injury to my feet. And, because of my “slow” or less intense running, I needed a lot less fuel than is typically recommended for marathoners, and still managed my blood glucose levels within my ideal target ranges despite 5, 6, and even 7 hours run on my feet. Yes, you can run marathons with type 1 diabetes. And yes, you can run any length endurance runs with type 1 diabetes! I also ran a 50k ultramarathon using the same methods.