2022 Strawberry Fields Forever Ultramarathon Race Report Recap

I recently ran my second-ever 50k ultramarathon. This is my attempt to provide a race recap or “race report”, which in part is to help people in the future considering this race and this course. (I couldn’t find a lot of race reports investigating this race!)

It’s also an effort to provide an example of how I executed fueling, enzyme dosing (because I have exocrine pancreatic insufficiency, known as EPI), and blood sugar management (because I have type 1 diabetes), because there’s also not a lot of practical guidance or examples of how people do this. A lot of it is individual, and what works for me won’t necessarily work for anyone, but if anything hopefully it will help other people feel not alone as they work to figure out what works for them!

Context of my running and training in preparation

I wrote quite a bit in this previous post about my training last year for a marathon and my first 50k. Basically, I’m slow, and I also choose to run/walk for my training and racing. This year I’ve been doing 30:60 intervals, meaning I run 30 seconds and walk 60 seconds.

Due to a combination of improved training (and having a year of training last year), as well as now having recognized I was not getting sufficient pancreatic enzymes so that I was not digesting and using the food I was eating effectively, this year has been going really well. I ended up training as far as a practice 50k about 5 weeks out from my race. I did several more mid- to high-20 mile runs as well. I also did a next-day run following my long runs, starting around 3-4 miles and eventually increasing to 8 miles the day after my 50k. The goal of these next-day runs was to practice running on tired legs.

Overall, I think this training was very effective for me. My training runs were easy paced, and I always felt like I could run more after I was done. I recovered well, and the next-day runs weren’t painful and I did not have to truncate or skip any of those planned runs. (Previous years, running always felt hard and I didn’t know what it was like to recover “well” until this year.) My paces also increased to about a minute/mile faster than last year’s easy pace. Again, that’s probably a combination of increased running overall and better digestion and recovery.

Last year I chose to run a marathon and then do a 50k while I was “trained up” for my marathon. This year, I wanted to do a 50k as a fitness assessment on the path to a 50 mile race this fall. I looked for local-ish 50k options that did not have much elevation, and found the Strawberry Fields Forever Ultra.

Why I chose this race, and the basics about this race

The Strawberry Fields Forever Ultra met most of my goal criteria, including that it was around the time that I wanted to run a 50k, so that I had almost 6 months to train and also before it got to be too hot and risked being during wildfire smoke season. (Sadly, that’s a season that now overlaps significantly with the summers here.) It’s local-ish, meaning we could drive to it, although we did spend the night before the race in the area just to save some stress the morning of the race. The race nicely started at 9am, and we drove home in the evening after the race.

The race is on a 10k (6.2 miles) looped course in North Bonneville, Washington, and hosted a 10k event (1 lap), a 50k event (5 laps), and also had 100k (10 laps) or (almost) 100 miles (16 laps). It does have a little bit of elevation – or “little” by ultramarathon standards. The site and all reports describe one hill and net 200 feet of elevation gain and loss. I didn’t love the idea of a 200 foot hill, but thought I could make do. It also describes the course as “grass and dirt” trails. You’ll see a map later where I’ve described some key points on the course, and it’s also worth noting that this course is very “crew-able”. Most people hang out at the start/finish, since it’s “just” a 10k loop and people are looping through pretty frequently. However, if you want to, either for moral or practical support, crew could walk over to various points, or my husband brought his e-bike and biked around between points on the course very easily using a mix of the other trails and actual roads nearby.

The course is well marked. Any turn had a white sign with a black arrow on it and also white arrows drawn on the ground, and there were dozens of little red/pink fluorescent flags marking the course. Any time there was a fork in the path, these flags (usually 2-3 for emphasis, which was excellent for tired brains) would guide you to the correct direction.

The nice thing about this race is it includes the 100 mile option and that has a course limit of 30 hours, which means all the other distances also have this course limit of 30 hours. That’s fantastic when a lot of 50k or 50 mile (or 100k, which is 62 miles) courses might have 12 hour or similar tighter course limits. If you wanted to have a nice long opportunity to cover the distance, with the ability to stop and rest (or nap/sleep), this is a great option for that.

With the 50k, I was aiming to match or ideally beat my time from my first 50k, recognizing that this course is harder given the terrain and hill. However, I think my fitness is higher, so beating that time even with the elevation gain seemed reasonable.

Special conditions and challenges of the 2022 Strawberry Fields Forever Ultramarathon

It’s worth noting that in 2021 there was a record abnormal heat wave due to a “heat dome” that made it 100+ degrees (F) during the race. Yikes. I read about that and I am not willing to run a race when I have not trained for that type of heat (or any heat), so I actually waited until the week before the race to officially sign up after I saw the forecast for the race. The forecast originally was 80 F, then bounced around mid 60s to mid 70s, all of which seemed doable. I wouldn’t mind some rain during the race, either, as rainy 50s and 60s is what I’ve been training in for months.

But just to make things interesting, for the 2022 event the Pacific Northwest got an “atmospheric river” that dumped inches of rain on Thursday..and Friday. Gulp. Scott and I drove down to spend the night Friday night before the race, and it was dumping hard rain. I began to worry about the mud that would be on the course before we even started the race. However, the rain finished overnight and we woke up to everything being wet, but not actively raining. It was actually fairly warm (60s), so even if it drizzled during the race it wouldn’t be chilly.

During the start of the race, the race director said we would get wet and joked (I thought) about practicing our backstroke. Then the race started, and we took off.

My race recap / race report the 2022 Strawberry Fields Forever Ultramarathon

I’ve included a picture below that I was sent a month or so before the race when I asked for a course map, and a second picture because I also asked for the elevation profile. I’ve marked with letters (A-I) points on the course that I’ll describe below for reference, and we ran counterclockwise this year so the elevation map I’ve marked with matching letters where “A” is on the right and “I” is on the left, matching how I experienced the course.

The course is slightly different in the start/finish area, but otherwise is 95% matching what we actually ran, so I didn’t bother grabbing my actual course map from my run since this one was handy and a lot cleaner than my Runkeeper-derived map of the race.

Annotated course map with points A-I
StrawberryFieldsForever-Ultra-Elevation-Profile

My Runkeeper elevation profile of the 50k (5 repeated laps) looked like this:
Runkeeper elevation profile of 5 loops on the Strawberry Fields Forever 50k course

I’ll describe my first experience through the course (Lap 1) in more detail, then a couple of thoughts about the experiences of the subsequent laps, in part to describe fueling and other choices I made.

Lap 1:

We left the start by running across the soccer field and getting on a paved path that hooked around the ballfield and then headed out a gate and up The Hill. This was the one hill I thought was on the course. I ran a little bit and passed a few people who walked on a shallower slope, then I also converted to a walk for the rest of the hill. It was the most crowded race start I’ve done, because there were so many people (150 across the 10k, 50k, 100k, and 100 miler) and such a short distance between the start and this hill. The Hill, as I thought of it, is point A on the course map.

Luckily, heading up the hill there are gorgeous purple wildflowers along the path and mountain views. At the top of the hill there are some benches at the point where we took a left turn and headed down the hill, going down the same elevation in about half a mile so it was longer than the uphill section. This downhill slope (B) was very runnable and gravel covered, whereas going up the hill was more dirt and mud.

At the bottom of the hill, there was a hairpin turn and we turned and headed back up the hill, although not all the way up, and more along a plateau in the side of the hill. The “plateau” is point C on the map. I thought it would be runnable once I got back up the initial hill, but it was mud pit after mud pit, and I would have two steps of running in between mud pits to carefully walk through. It was really frustrating. I ended up texting to my parents and Scott that it was about 1.7 miles of mud (from the uphill, and the plateau) before I got to some gravel that was more easily runnable. Woohoo for gravel! This was a nice, short downhill slope (D) before we flattened out and switched back to dirt and more mud pits.

This was the E area, although it did feel more runnable than the plateau because there were longer stretches between muddy sections.

Eventually, we saw the river and came out from the trail into a parking lot and then jogged over onto the trail that parallels the river for a while. This trail that I thought of as “River Road” (starting around point F) is just mowed grass and is between a sharp bluff drop with opening where people would be down at the river fishing, and in some cases we were running *underneath* fishing lines from the parking spots down to the river! There were a few people who would be walking back and forth from cars to the river, but in general they were all very courteous and there was no obstruction of the trail. Despite the mowed grass aspect of the trail, this stretch physically and psychologically felt easier because there were no mud pits for 90% of it. Near the end there were a few muddy areas right about the point we hopped back over into the road to connect up a gravel road for a short spurt.

This year, the race actually put a bonus aid station out here. I didn’t partake, but they had a tent up with two volunteers who were cheerful and kind to passing runners, and it looked like they had giant things of gatorade or water, bottled water, and some sugared soda. They probably had other stuff, but that’s just what I saw when passing.

After that short gravel road bit, we turned back onto a dirt trail that led us to the river. Not the big river we had been running next to, but the place where the Columbia River overflowed the trail and we had to cross it. This is what the race director meant by practicing our backstroke.

You can see a video in this tweet of how deep and far across you had to get in this river crossing (around point G, but hopefully in future years this isn’t a point of interest on the map!!)

Coming out of the river, my feet were like blocks of ice. I cheered up at the thought that I had finished the wet feet portion of the course and I’d dry off before I looped back around and hit the muddy hill and plateau again. But, sadly, just around the next curve, came a mud POND. Not a pit, a pond.

Again, ankle deep water and mud, not just once but in three different ponds all within 30 seconds or so of each other. It was really frustrating, and obviously you can’t run through them, so it slowed you down.

Then finally after the river crossing and the mud ponds, we hooked a right into a nice, forest trail that we spent about a mile and a half in (point H). It had a few muddy spots like you would normally expect to get muddy on a trail, but it wasn’t ankle deep or water filled or anything else. It was a nice relief!

Then we turned out of the forest and crossed a road and headed up one more (tiny, but it felt annoying despite how small it looks on the elevation profile) hill (point I), ran down the other side of that slope, stepped across another mud pond onto a pleasingly gravel path, and took the gravel path about .3 miles back all the way to complete the first full lap.

Phew.

I actually made pretty good time the first loop despite not knowing about all the mud or river crossing challenges. I was pleased with my time which was on track with my plan. Scott took my pack about .1 miles before I entered the start/finish area and brought it back to me refilled as I exited the start/finish area.

Lap 2:

The second lap was pretty similar. The Hill (A) felt remarkably harder after having experienced the first loop. I did try to run more of the downhill (B) as I recognized I’d make up some time from the walking climb as well as knowing I couldn’t run up the plateau or some of the mud pits along the plateau (C) as well as I had expected. I also decided running in the mud pits didn’t work, and went with the safer approach of stepping through them and then running 2 steps in between. I was a little slower this time, but still a reasonable pace for my goals.

The rest of the loop was roughly the same as the first, the mud was obnoxious, the river crossing freezing, the mud obnoxious again, and relief at running through the forest.

Scott met me at the end of the river road and biked along the short gravel section with me and went ahead so he could park his bike and take video of my second river crossing, which is the video above. I was thrilled to have video of that, because the static pictures of the river crossing didn’t feel like it did the depth and breadth of the water justice!

At the end of lap 2, Scott grabbed my pack again at the end of the loop and said he’d figured out where to meet me to give it back to me after the hill…if I wanted that. Yes, please! The bottom of the hill where you hairpin turn to go back up the plateau is the 1 mile marker point, so that means I ran the first mile of the third lap without my pack, and not having the weight of my full pack (almost 3L of water and lots of snacks and supplies: more on that pack below) was really helpful for my third time up the hill. He met me as planned at the bottom of the downhill (B) and I took my pack back which made a much nicer start to lap 3.

Lap 3:

Lap 3 for some reason I came out of the river crossing and the mud ponds feeling like I got extra mud in my right shoe. It felt gritty around the right side of my right food, and I was worried about having been running for so many hours with soaked feet. I decided to stop at a bench in the forest section and swap for dry socks. In retrospect, I wish I had stopped somewhere else, because I got swarmed by these moth/gnat/mosquito things that looked gross (dozens on my leg within a minute of sitting there) that I couldn’t brush off effectively while I was trying to remove my gaiters, untie my shoes, take my shoes off, peel my socks and bandaids and lambs wool off, put lubrication back on my toes, put more lambs wool on my toes, put the socks and shoes back on, and re-do my gaiters. Sadly, it took me 6 minutes despite me moving as fast as I could to do all of those things (this was a high/weirdly designed bench in a shack that looked like a bus stop in the middle of the woods, so it wasn’t the best way to sit, but I thought it was better than sitting on the ground).

(The bugs didn’t hurt me at the time, but two days later my dozens of bites all over my leg are red and swollen, though thankfully they only itch when they have something chafing against them.)

Anyway, I stood up and took off again and was frustrated knowing that it had taken 6 minutes and basically eaten the margin of time I had against my previous 50k time. I saw Scott about a quarter of a mile later, and I saw him right as I realized I had also somewhere lost my baggie of electrolyte pills. Argh! I didn’t have back up for those (although I had given Scott backups of everything else), so that spiked my stress levels as I was due for some electrolytes and wasn’t sure how I’d do with 3 or so more hours without them.

I gave Scott my pack and tasked him with checking my brother-in-law’s setup to see if he had spare electrolytes, while he was refilling my pack to give me in lap 4.

Lap 4:

I was pretty grumpy given the sock timing and the electrolyte mishap as I headed into lap 4. The hill still sucked, but I told myself “only one more hill after this!” and that thought cheered me up.

Scott had found two electrolyte options from my brother-in-law and brought those to me at the end of mile 1 (again, bottom of B slope) with my pack. He found two chewable and two swallow pills, so I had options for electrolytes. I chewed the first electrolyte tab as I headed up the plateau, and again talked myself through the mud pits with “only one more time through the mud pits after this!”.

I also tried overall to bounce back from the last of mile 4 where I let myself get frustrated, and try to take more advantage of the runnable parts of the course. I ran downhill (B) more than the previous laps, mostly ignoring the audio cues of my 30:60 intervals and probably running more like 45:30 or so. Similarly, the downhill gravel after the mud pits (D) I ran most of without paying attention to the audio run cues.

Scott this time also met me at the start of the river road section, and I gave him my pack again and asked him to take some things out that he had put in. He put in a bag with two pairs of replacement socks instead of just one pair of socks, and also put in an extra beef stick even though I didn’t ask for it. I asked him to remove it, and he did, but explained he had put it in just in case he didn’t find the electrolytes because it had 375g of sodium. (Sodium is primarily the electrolyte I am sensitive to and care most about). So this was actually a smart thing, although because I haven’t practiced eating larger amounts of protein and experienced enzyme dosing for it on the run, I would be pretty nervous about eating it in a race, so that made me a bit unnecessarily grumpy. Overall though, it was great to see him extra times on the course at this point, and I don’t know if he noticed how grumpy I was, but if he did he ignored it and I cheered up again knowing I only had “one more” of everything after this lap!

The other thing that helped was he biked my pack down the road to just before the river crossing, so I ran the river road section like I did lap 3 and 4 on the hill, without a pack. This gave me more energy and I found myself adding 5-10 seconds to the start of my run intervals to extend them.

The 4th river crossing was no less obnoxious and cold, but this time it and the mud ponds didn’t seem to embed grit inside my shoes, so I knew I would finish with the same pair of socks and not need another change to finish the race.

Lap 5:

I was so glad I was only running the 50k so that I only had 5 laps to do!

For the last lap, I was determined to finish strong. I thought I had a chance of making up a tiny bit of the sock change time that I had lost. I walked up the hill, but again ran more than my scheduled intervals downhill, grabbed my bag from Scott, picked my way across the mud pits for the final time (woohoo!), ran the downhill and ran a little long and more efficiently on the single track to the river road.

Scott took my pack again at the river road, and I swapped my intervals to be 30:45, since I was already running closer to that and I knew I only had 3.5 or so miles to go. I took my pack back at the end of river road and did my last-ever ice cold river crossing and mud pond extravaganza. After I left the last mud pond and turned into the forest, I switched my intervals to 30:30. I managed to keep my 30:30 intervals and stayed pretty quick – my last mile and a half was the fastest of the entire race!

I came into the finish line strong, as I had hoped to finish. Woohoo!

Overall strengths and positives from the race

Overall, running-wise I performed fairly well. I had a strong first lap and decent second lap, and I got more efficient on the laps as I went, staying focused and taking advantage of the more runnable parts of the course. I finished strong, with 30:45 intervals for over a mile and 30:30 intervals for over a mile to the finish.

Also, I didn’t quit after experiencing the river crossing and the mud ponds and the mud pits of the first lap. This wasn’t an “A” race for me or my first time at the distance, so it would’ve been really easy to quit. I probably didn’t in part because we did pay to spend the night before and drove all that way, and I didn’t want to have “wasted” Scott’s time by quitting, when I was very capable of continuing and wasn’t injured. But I’m proud of mostly the way I handled the challenges of the course, and for how I readjusted from the mental low and frustration after realizing how long my sock change took in lap 3. I’m also pleased that I didn’t get injured, given the terrain (mud, river crossing, and uneven grass to run on for most of the course). I’m also pleased and amazed I didn’t hurt my feet, cause major blisters, or have anything really happen to them after hours of wet, muddy, never-drying-off feet.

The huge positive was my fueling, electrolytes, and blood glucose management.

I started taking my electrolyte pills that have 200+mg of sodium at about 45 minutes into the race, on schedule. My snack choices also have 100-150mg of sodium, which allowed me to not take electrolyte pills as often as I would otherwise need to (or on a hotter day with more sweat – it was a damp, mid-60s day but I didn’t sweat as much as I usually do). But even with losing my electrolytes, I used two chewable 100mg sodium electrolytes instead and otherwise ended up with sufficient electrolytes. Even with ideal electrolyte supplementation, I’m very sensitive to sodium losses and am a salty sweater, and I have a distinct feeling when my electrolytes are insufficient, so not having that feeling during after the race was a big positive for me.

So was my fueling overall. The race started at 9am, and I woke up at 6am to eat my usual pre-race breakfast (a handful of pecans, plus my enzyme supplementation) so that it would both digest effectively and also be done hitting my blood sugar by the time the race started. My BGs were flat 120s or 130s when I started, which is how I like them. I took my first snack about an hour and 10 minutes into the race, which is about 15g carb (10g fat, 2g protein) of chili cheese flavored Fritos. For this, I didn’t dose any insulin as I was in range, and I took one lipase-only enzyme (which covers about 8g of fat for me) and one multi-enzyme (that covers about 6g of fat and probably over a dozen grams of protein). My second snack was an hour later, when I had a gluten free salted caramel Honey Stinger stroopwaffle (21g carb, 6 fat, 1 protein). For the stroopwaffle I ended up only taking a lipase-only pill to cover the fat, even though there’s 1g of protein. For me, I seem to be ok (or have no symptoms) from 2-3g of uncovered fat and 1-2g of uncovered protein. Anything more than that I like to dose enzymes for, although it depends on the situation. Throughout the day, I always did 1 lipase-only and 1 multi-enzyme for the Fritos, and 1 lipase-only for the stroopwaffle, and that seemed to work fine for me. I think I did a 0.3u (less than a third of the total insulin I would normally need) bolus for my stroopwaffle because I was around 150 mg/dL at the time, having risen following my un-covered Frito snack, and I thought I would need a tiny bit of insulin. This was perfect, and I came back down and flattened out. An hour and 20 minutes after that, I did another round of Fritos. An hour or so after that, a second stroopwaffle – but this time I didn’t dose any insulin for it as my BG was on a downward slope. An hour later, more Fritos. A little bit after that, I did my one single sugar-only correction (an 8g carb Airhead mini) as I was still sliding down toward 90 mg/dL, and while that’s nowhere near low, I thought my Fritos might hit a little late and I wanted to be sure I didn’t experience the feeling of a low. This was during the latter half of loop 4 when I was starting to increase my intensity, so I also knew I’d likely burn a little more glucose and it would balance out – and it did! I did one last round of Fritos during lap 5.
CGM graph during 50k ultramarathon

This all worked perfectly. I had 100% time in range between 90 and 150 mg/dL, even with 102g of “real food” carbs (15g x 4 servings of Fritos, 21g x 2 waffles), and one 8g Airhead mini, so in total I had 110g grams of carbs across ~7+ hours. This perfectly matched my needs with my run/walk moderate efforts.

BG  and carb intake plotted along CGM graph during 50k ultramarathon

I also nailed the enzymes, as during the race I didn’t have any GI-related symptoms and after the race and the next day (which is the ultimate verdict for me with EPI), no symptoms.

So it seems like my practice and testing with low carbs, Fritos, and waffles worked out well! I had a few other snacks in my pack (yogurt-covered pretzels, peanut butter pretzel nuggets), but I never thought of wanting them or wanting something different. I did plan to try to do 2 snacks per hour, but I ended up doing about 1 per hour. I probably could have tolerated more, but I wasn’t hungry, my BGs were great, and so although it wasn’t quite according to my original plan I think this was ideal for me and my effort level on race day.

The final thing I think went well was deciding on the fly after loop 2 to have Scott take my pack until after the hill (so I ran the up/downhill mile without it), and then for additional stretches along river road in laps 4 and 5. I had my pocket of my shorts packed with dozens of Airheads and mints, so I was fine in terms of blood sugar management and definitely didn’t need things for a mile at a time. I’m usually concerned about staying hydrated and having water whenever I want to sip, plus for swallowing electrolytes and enzyme pills to go with my snacks, but I think on this course with the number of points Scott could meet me (after B, at F all through G, and from I to the finish), I could have gotten away with not having my pack the whole time; having WAY less water in the pack (I definitely didn’t need to haul 3L the whole time, that was for when I might not see Scott every 2-3 laps) and only one of each snack at a time.

Areas for improvement from my race

I trained primarily on gravel or paved trails and roads, but despite the “easy” elevation profile and terrain, this was essentially my first trail ultra. I coped really well with the terrain, but the cognitive burden of all the challenges (Mud pits! River crossing! Mud ponds!) added up. I’d probably do a little more trail running and hills (although I did some) in the final weeks before the race to help condition my brain a little more.

I’ll also continue to practice fueling so I can eat more regularly than every hour to an hour and a half, even though this was the most I’ve ever eaten during a run, I did well with the quantities, and my enzyme and BG management were also A+. But I didn’t eat as much as I planned for, and I think that might’ve helped with the cognitive fatigue, too, by at least 5-10%.

I also now have the experience of a “stop” during a race, in this case to swap my socks. I’ve only run one ultra and never stopped before to do gear changes, so that experience probably was sufficient prep for future stops, although I do want to be mentally stronger/less frustrated by unanticipated problem solving stops.

Specific to this course, as mentioned above, I could’ve gotten away with less supplies – food and water – in my pack. I actually ran a Ragnar relay race with a group of fellow T1s a few years back where I finished my run segment and…no one was there to meet me. They went for Starbucks and took too long to get there, so I had to stand in the finishing chute waiting for 10-15 minutes until someone showed up to start the next run leg. Oh, and that happened in two of the three legs I ran that day. Ooof. Standing there tired, hot, with nothing to eat or drink, likely added to my already life-with-type-1-diabetes-driven-experiences of always carrying more than enough stuff. But I could’ve gotten away very comfortably with carrying 1L of water and one set of each type of snacks at a time, given that Scott could meet me at 1 mile (end of B), start (F) and end of river road (before G), and at the finish, so I would never have been more than 2-2.5 miles without a refill, and honestly he could’ve gotten to every spot on the trail barring the river crossing bit to meet me if I was really in need of something. Less weight would’ve made it easier to push a little harder along the way. Basically, I carried gear like I was running a solo 30 mile effort at a time, which was safe but not necessary given the course. If I re-ran this race, I’d feel a lot more comfortable with minimal supplies.

Surprises from my race

I crossed the finish line, stopped to get my medal, then was waiting for my brother-in-law to finish another lap (he ran the 100k: 62 miles) before Scott and I left. I sat down for 30 minutes and then walked to the car, but despite sitting for a while, I was not as stiff and sore as I expected. And getting home after a 3.5 hour car ride…again I was shocked at how minimally stiff I was walking into the house. The next morning? More surprises at how little stiff and sore I was. By day 3, I felt like I had run a normal week the week prior. So in general, I think this is reinforcement that I trained really well for the distance and my long runs up to 50k and the short to medium next day runs also likely helped. I physically recovered well, which is again part training but also probably better fueling during the race, and of course now digesting everything that I ate during and after the race with enzyme supplementation for EPI!

However, the interesting (almost negative, but mostly interesting) thing for me has been what I perceived to be adrenal-type fatigue or stress hormone fatigue. I think it’s because I was unused to focusing on challenging trail conditions for so many hours, compared to running the same length of hours on “easy” paved or gravel trails. I actually didn’t listen to an audiobook, music, or podcast for about half of the race, because I was so stimulated by the course itself. What I feel is adrenal fatigue isn’t just being physically or mentally tired but something different that I haven’t experienced before. I’m listening to my body and resting a lot, and I waited until day 4 to do my first easy, slow run with much longer walk intervals (30s run, 90s walk instead of my usual 30:60). Day 1 and 2 had a lot of fatigue and I didn’t feel like doing much, Day 3 had notable improvement on fatigue and my legs and body physically felt back to normal for me. Day 4 I ran slowly, Day 5 I stuck with walking and felt more fatigue but no physical issues, Day 6 again I chose to walk because I didn’t feel like my energy had fully returned. I’ll probably stick with easy, longer walk interval runs for the next week or two with fewer days running until I feel like my fatigue is gone.

General thoughts about ultramarathon training and effective ultra race preparation

I think preparation makes a difference in ultramarathon running. Or maybe that’s just my personality? But a lot of my goal for this race was to learn what I could about the course and the race setup, imagine and plan for the experience I wanted, plan for problem solving (blisters, fuel, enzymes, BGs, etc), and be ready and able to adapt while being aware that I’d likely be tired and mentally fatigued. Generally, any preparation I could do in terms of deciding and making plans, preparing supplies, etc would be beneficial.

Some of the preparation included making lists in the weeks prior about the supplies I’d need in my pack, what Scott should have to refill my pack, what I’d need the night and morning before since we would not be at home, and after-race supplies for the 3.5h drive home.

From the lists, the week before the race I began grouping things. I had my running pack filled and ready to go. I packed my race outfit in a gallon bag, a full set of backup clothes in another gallon bag and labeled them, along with a separate post-run outfit and flip flops for the drive home. I also included a washcloth for wiping sweat or mud off after the run, and I certainly ended up needing that! I packed an extra pair of shoes and about 4 extra pairs of socks. I also had separate baggies with bandaids of different sizes, pre-cut strips of kinesio tape for my leg and smaller patches for blisters, extra squirrel nut butter sticks for anti-chafing purposes, as well as extra lambs wool (that I lay across the top of my toes to prevent socks from rubbing when they get wet from sweat or…river crossings, plus I can use it for padding between my toes or other blister-developing spots). I had sunscreen, bug spray, sungless, rain hat, and my sunny-weather running visor that wicks away sweat. I had low BG carbs for me to put in my pockets, a backup bag for Scott to refill, and a backup to the backup. The same for my fuel stash: my backpack was packed, I packed a small baggie for Scott as well as a larger bag with 5-7 of everything I thought I might want, and also an emergency backup baggie of enzymes.

*The only thing I didn’t have was a backup baggie of electrolyte pills. Next time, I’ll add this to my list and treat them like enzymes to make sure I have a separate backup stash.

I even made a list and gave it to Scott that mapped out where key things were for during and after the race. I don’t think he had to use it, because he was only digging through the snack bag for waffles and Fritos, but I did that so I didn’t have to remember where I had put my extra socks or my spare bandaids, etc. He basically had a map of what was in each larger bag. All of this was to reduce the decision and communication because I knew I’d have decision fatigue.

This also went for post-race planning. I told Scott to encourage me to change clothes, and it was worth the energy to change so I didn’t sit in cold, wet clothes for the long drive home. I pre-made a gluten free ham and cheese quesadilla (take two tortillas, fill with shredded cheese and slices of ham, microwave, cut into quarters, stick in baggies, mark with fat/protein/carb counts, and refrigerate) so we could warm that up in the car (this is what I use) so I had something to eat on the way home that wasn’t more Fritos or waffles. I didn’t end up wanting it, but I also brought a can of beef stew with carrots and potatoes, that I generally like as a post-race or post-run meal, and a plastic container and a spoon so I could warm up the stew if I wanted it. Again, all of this pre-planned and put on the list weeks prior to the race so I didn’t forget things like the container or the spoon.

The other thing I think about a lot is practicing everything I want to do for a race during a training run. People talk about eating the same foods, wearing the same clothes, etc. I think for those of us with type 1 diabetes (or celiac, EPI, or anything else), it’s even more important. With T1D, it’s so helpful to have the experience adjusting to changing BG levels and knowing what to do when you’re dropping or low and having a snack, vs in range and having a fueling snack, or high and having a fueling snack. I had 100% TIR during this run, but I didn’t have that during all of my training runs. Sometimes I’d plateau around 180 mg/dL and be over-cautious and not bring my BGs down effectively; other times I’d overshoot and cause a drop that required extra carbs to prevent or minimize a low. Lots of practice went into making this 100% TIR day happen, and some of it was probably a bit of luck mixed in with all the practice!

But generally, practice makes it a lot easier to know what to do on the fly during a race when you’re tired, stressed, and maybe crossing an icy cold river that wasn’t supposed to be part of your course experience. All that helps you make the best possible decisions in the weirdest of situations. That’s the best you can hope for with ultrarunning!

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

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

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

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

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

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

First and foremost, managing blood sugar levels comes first.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

Your mind races.

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

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

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

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

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

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

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

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

Your mind races.

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

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

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

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

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

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

Your mind races.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

Findings from the world’s first RCT on open source AID (the CREATE trial) presented at #ADA2022

(You can also see a Twitter thread here summarizing the study results, if you are interested in sharing the study with your networks.)

TLDR: The CREATE Trial was a multi-site, open-labeled, randomized, parallel-group, 24-week superiority trial evaluating the efficacy and safety of an open-source AID system using the OpenAPS algorithm in a modified version of AndroidAPS. Our study found that across children and adults, the percentage of time that the glucose level was in the target range of 3.9-10mmol/L [70-180mg/dL] was 14 percentage points higher among those who used the open-source AID system (95% confidence interval [CI], 9.2 to 18.8; P<0.001) compared to those who used sensor augmented pump therapy; a difference that corresponds to 3 hours 21 minutes more time spent in target range per day. The system did not contribute to any additional hypoglycemia. Glycemic improvements were evident within the first week and were maintained over the 24-week trial. This illustrates that all people with T1D, irrespective of their level of engagement with diabetes self-care and/or previous glycemic outcomes, stand to benefit from AID. This study concluded that open-source AID using the OpenAPS algorithm within a modified version of AndroidAPS, a widely used open-source AID solution, is efficacious and safe.

The backstory on this study

We developed the first open source AID in late 2014 and shared it with the world as OpenAPS in February 2015. It went from n=1 to (n=1)*2 and up from there. Over time, there were requests for data to help answer the question “how do you know it works (for anybody else)?”. This led to the first survey in the OpenAPS community (published here), followed by additional retrospective studies such as this one analyzing data donated by the community,  prospective studies, and even an in silico study of the algorithm. Thousands of users chose open source AID, first because there was no commercial AID, and later because open source AID such as the OpenAPS algorithm was more advanced or had interoperability features or other benefits such as quality of life improvements that they could not find in commercial AID (or because they were still restricted from being able to access or afford commercial AID options). The pile of evidence kept growing, and each study has shown safety and efficacy matching or surpassing commercial AID systems (such as in this study), yet still, there was always the “but there’s no RCT showing safety!” response.

After Martin de Bock saw me present about OpenAPS and open source AID at ADA Scientific Sessions in 2018, we literally spent an evening at the dinner table drawing the OpenAPS algorithm on a napkin at the table to illustrate how OpenAPS works in fine grained detail (as much as one can do on napkin drawings!) and dreamed up the idea of an RCT in New Zealand to study the open source AID system so many were using. We sought and were granted funding by New Zealand’s Health Research Council, published our protocol, and commenced the study.

This is my high level summary of the study and some significant aspects of it.

Study Design:

This study was a 24-week, multi-centre randomized controlled trial in children (7–15 years) and adults (16–70 years) with type 1 diabetes comparing open-source AID (using the OpenAPS algorithm within a version of AndroidAPS implemented in a smartphone with the DANA-i™ insulin pump and Dexcom G6® CGM), to sensor augmented pump therapy. The primary outcome was change in the percent of time in target sensor glucose range (3.9-10mmol/L [70-180mg/dL]) from run-in to the last two weeks of the randomized controlled trial.

  • This is a LONG study, designed to look for rare adverse events.
  • This study used the OpenAPS algorithm within a modified version of AndroidAPS, meaning the learning objectives were adapted for the purpose of the study. Participants spent at least 72 hours in “predictive low glucose suspend mode” (known as PLGM), which corrects for hypoglycemia but not hyperglycemia, before proceeding to the next stage of closed loop which also then corrected for hyperglycemia.
  • The full feature set of OpenAPS and AndroidAPS, including “supermicroboluses” (SMB) were able to be used by participants throughout the study.

Results:

Ninety-seven participants (48 children and 49 adults) were randomized.

Among adults, mean time in range (±SD) at study end was 74.5±11.9% using AID (Δ+ 9.6±11.8% from run-in; P<0.001) with 68% achieving a time in range of >70%.

Among children, mean time in range at study end was 67.5±11.5% (Δ+ 9.9±14.9% from run-in; P<0.001) with 50% achieving a time in range of >70%.

Mean time in range at study end for the control arm was 56.5±14.2% and 52.5±17.5% for adults and children respectively, with no improvement from run-in. No severe hypoglycemic or DKA events occurred in either arm. Two participants (one adult and one child) withdrew from AID due to frustrations with hardware issues.

  • The pump used in the study initially had an issue with the battery, and there were lots of pumps that needed refurbishment at the start of the study.
  • Aside from these pump issues, and standard pump site/cannula issues throughout the study (that are not unique to AID), there were no adverse events reported related to the algorithm or automated insulin delivery.
  • Only two participants withdrew from AID, due to frustration with pump hardware.
  • No severe hypoglycemia or DKA events occurred in either study arm!
  • In fact, use of open source AID improved time in range without causing additional hypoglycemia, which has long been a concern of critics of open source (and all types of) AID.
  • Time spent in ‘level 1’ and ‘level 2’ hyperglycemia was significantly lower in the AID group as well compared to the control group.

In the primary analysis, the mean (±SD) percentage of time that the glucose level was in the target range (3.9 – 10mmol/L [70-180mg/dL]) increased from 61.2±12.3% during run-in to 71.2±12.1% during the final 2-weeks of the trial in the AID group and decreased from 57.7±14.3% to 54±16% in the control group, with a mean adjusted difference (AID minus control at end of study) of 14.0 percentage points (95% confidence interval [CI], 9.2 to 18.8; P<0.001). No age interaction was detected, which suggests that adults and children benefited from AID similarly.

  • The CREATE study found that across children and adults, the percentage of time that the glucose level was in the target range of 3.9-10mmol/L [70-180mg/dL] was 14.0 percentage points higher among those who used the open-source AID system compared to those who used sensor augmented pump therapy.
  • This difference reflects 3 hours 21 minutes more time spent in target range per day!
  • For children AID users, they spent 3 hours 1 minute more time in target range daily (95% CI, 1h 22m to 4h 41m).
  • For adult AID users, they spent 3 hours 41 minutes more time in target range daily (95% CI, 2h 4m to 5h 18m).
  • Glycemic improvements were evident within the first week and were maintained over the 24-week trial. Meaning: things got better quickly and stayed so through the entire 24-week time period of the trial!
  • AID was most effective at night.
Difference between control and AID arms overall, and during day and night separately, of TIR for overall, adults, and kids

One thing I think is worth making note of is that one criticism of previous studies with open source AID is regarding the self-selection effect. There is the theory that people do better with open source AID because of self-selection and self-motivation. However, the CREATE study recruited a diverse cohort of participants, and the study findings (as described above) match all previous reports of safety and efficacy outcomes from previous studies. The CREATE study also found that the greatest improvements in TIR were seen in participants with lowest TIR at baseline. This means one major finding of the CREATE study is that all people with T1D, irrespective of their level of engagement with diabetes self-care and/or previous glycemic outcomes, stand to benefit from AID.

This therefore means there should be NO gatekeeping by healthcare providers or the healthcare system to restrict AID technology from people with insulin-requiring diabetes, regardless of their outcomes or experiences with previous diabetes treatment modalities.

There is also no age effect observed in the trail, meaning that the results of the CREATE Trial demonstrated that open-source AID is safe and effective in children and adults with type 1 diabetes. If someone wants to use open source AID, they would likely benefit, regardless of age or past diabetes experiences. If they don’t want to use open source AID or commercial AID…they don’t have to! But the choice should 100% be theirs.

In summary:

  • The CREATE trial was the first RCT to look at open source AID, after years of interest in such a study to complement the dozens of other studies evaluating open source AID.
  • The conclusion of the CREATE trial is that open-source AID using the OpenAPS algorithm within a version of AndroidAPS, a widely used open-source AID solution, appears safe and effective.
  • The CREATE trial found that across children and adults, the percentage of time that the glucose level was in the target range of 3.9-10mmol/L [70-180mg/dL] was 14.0 percentage points higher among those who used the open-source AID system compared to those who used sensor augmented pump therapy; a difference that reflects 3 hours 21 minutes more time spent in target range per day.
  • The study recruited a diverse cohort, yet still produced glycemic outcomes consistent with existing open-source AID literature, and that compare favorably to commercially available AID systems. Therefore, the CREATE Trial indicates that a range of people with type 1 diabetes might benefit from open-source AID solutions.

Huge thanks to each and every participant and their families for their contributions to this study! And ditto, big thanks to the amazing, multidisciplinary CREATE study team for their work on this study.

Note that the continuation phase study results are slated to be presented this fall at another conference!

Findings from the RCT on open source AID, the CREATE Trial, presented at #ADA2022

Reflecting on 4 months with Exocrine Pancreatic Insufficiency (EPI) and Experiences with Pancreatic Enzyme Replacement Therapy (PERT)

Exocrine Pancreatic Insufficiency (EPI or PEI) is an invisible disease – you don’t see or hear much of it and there’s not a lot of information for patients online, nor information written by people with EPI. (That’s in part why I’ve been documenting my experiences with EPI – more at DIYPS.org/EPI if you want to see the other EPI-related posts that I’ve written).

I’ve now spent more than 4 months with (known) EPI and taking pancreatic enzyme replacement therapy (PERT), and I’m sharing what I’ve found so far that’s worked for me. I also wanted to share an update on my experiences and what I wish I had known at the start that I know now.

Mainly, it gets better. It gets easier.

4 months on PERT for EPI

“It” being how I felt and now feel, and the process of figuring out how much enzymes to take, and the process of working more math into the choices of what, when, and how I was eating. It’s a lot of work, but it has gotten easier. And I feel a lot better. I now have multi-week streaks where I have perfect dosing for everything that I eat and dose for, and it’s rare to not get it right.

The early weeks were not this great: I definitely felt better than before, but not “back to normal”.

Now, I feel “back to normal” like I think I did 2-3 years ago before symptoms became noticeable. When I don’t manage to dose perfectly, the symptoms are way more minimal than previously, in part due to the fact that I’ve had so many days of feeling great and in part due to the fact that the margin of error is a lot smaller since I’ve figured out a good ratio of lipase:fat and protease:protein that works well and reliably for me.

This has confirmed for me that titrating doses of enzyme does matter. I documented everything I was eating (including listing out the amount of fat and protein) and the amount/level of enzymes I was taking. Over time, I was able to see a general threshold above/below which dosing usually worked or didn’t work, and then test slightly smaller amounts of fat and/or protein to get to an amount that reliably “worked” with that size of enzyme dose. From there, it was simple math to divide the thousand units of lipase in that size of enzyme dose by the grams of fat or protein to identify the ratio of fat:lipase or protein:protease that I needed. This has helped me get the right dose of enzymes for every meal. It has also enabled me to then choose between the more expensive and higher-dose prescription enzyme pills I have, or choose a combination of prescription and smaller-dose single or multi-enzyme over the counter pills. This ends up giving me more flexibility in the cost of enzymes it takes to cover the food I want to eat (or snack, or treat, or whatever) as well as more precision with dosing the right level of enzyme instead of 1x, 2x, 3x (etc.) a single dose size prescription pill.

In addition to feeling a lot better simply by having better GI-related outcomes and massive reduction in symptoms 95% of the time, my energy levels are way up. I’m also training to run an ultramarathon again this year, and the way I feel during training this year (with enzymes) compared to last year is startling. Even though I have another year’s worth of experience running that I didn’t have last year, the way I feel during and after runs is likely more attributable to the fact that I’m now digesting what I’m eating.

Additionally, the diversity of food that I’m choosing to eat is increasing constantly. I started conservatively, in part due to trying to figure out if I still had any FODMAP-related sensitivity, and also to make it easier to get the math “right” to figure out my optimal dose. As I got confident with my ratios and dosing PERT, I began eating a wider selection of foods, and finally have eaten my way back to eating actual onions (!) in the form of gluten free onion rings. They were delicious, and gave me zero problems. So I’m now confident the FODMAP-perceived sensitivities was really the increasing sensitivity to fat and protein as my elastase levels were dropping. It’s wonderful to not be as restricted in my food options. (I still have celiac disease and eat 100% gluten free and can’t have any cross-contamination, but after almost a year of not eating onion or garlic in any form including “natural flavors” of foods… “just” eating gluten free feels amazingly plentiful in options now.)

And because I’ve eaten more and a greater selection of foods, the thought of eating food doesn’t scare me anymore. I don’t cringe at the thought of actually eating, like I used to. I know it’s a matter of estimating or counting the fat and protein and dosing for it. If in doubt, I try to round up the number of pills I’m taking to provide a buffer. Unlike insulin, taking a little too much enzyme doesn’t hurt (other than the cost). But also like insulin (after almost 20 years), I am no longer counting the cost of every dose in my head with every meal. That definitely took over 3 months, because before then I was swallowing a PERT pill and knowing each and every one costs $9. Ugh. So that’s an improvement, even though I’m still aware of the cost, it’s not quite as bothersome to me on an every-instance basis.

Things aren’t perfect, though, despite it being a lot better. I still get overwhelmed sometimes by the amount of work to decide what I want to eat and how I’m going to estimate what is in it to try to figure out how much PERT to dose.

Some of the strategies I’ve identified that help reduce being overwhelmed include:

  • Asking for help when I can. I ask Scott (my husband) when he’s standing in the kitchen to glance at a label of a food and tell me the counts (grams of fat and protein per serving), so I can decide if I want to build a meal with that item in it. I also sometimes ask him to help me portion out individual servings of foods, such as taking a larger bag of chips and telling him the serving size that I want and asking him to weigh them out.
  • Separate the work of preparing (and counting) food from the process of deciding what to eat. (I hate using a scale and weighing things out, but it’s been really helpful to pre-portion snacks and other items). Having the pre-portioned and pre-counted amounts helps me then more easily incorporate them on the fly, because I’ve already done the counting work of figuring out what’s in them. (I either make a note on my phone in a spreadsheet or write with a marker on the baggie what the counts are.) Separating the work in advance from the decision of what to eat when it’s time to eat helps me cut down on the decision fatigue that occurs a lot for me.
  • Buying individual portions and “snack size” items of things I regularly eat. When I can find them, and thankfully I can afford to, I try to buy individual sizes of things that are pre-packaged and have the nutrition label for that serving size. It’s less work to portion it out and figure out the counts for it, so while it’s sometimes more expensive it saves me time and makes me more likely to incorporate it into my food choices.
  • Asking for help estimating what’s in mystery food (e.g. unlabeled/uncounted food items). I’ve got almost 20 years experience of estimating carb counts, but only a few months attempts of trying to estimate fat and protein counts. Sometimes I ask Scott to pitch in an estimate. Sometimes we try to look up an equivalent item (e.g., if assessing a local gluten free hamburger we got as takeout food, we’ll look up online what a few other chain restaurant hamburgers would be, and use that to triangulate). Sometimes he’ll weigh it on the scale and we’ll eyeball proportions of fat and protein in the meat versus the vegetables or rice. I’m already getting better at guesstimating, so like carb counting I imagine this will continue to get easier over time.

Managing decision fatigue is now the biggest hassle for me. I have developed a nice routine for taking counts and converting that to the right PERT doses, but I still get frustrated with having to think about what I’m eating and how I’m going to dose for it sometimes. This may be somewhat influenced by the fact that I’m running a lot and trying to eat a slightly higher level of protein than I would naturally be picking out in my diet. So having to pay attention to everything to count it for dosing and overall trying to achieve a general higher baseline of protein sometimes gets annoying (although obviously the increased need for protein is a choice, whereas EPI and dosing in general is not!).

In general, I’ve not found it hard to remember to take my enzymes. I’ve developed habits around figuring out my counts, converting that to what number and type of pills I’m taking, and I get those out to take with my first bite and/or throughout my meal, depending on the number. One thing that has helped with this is getting smaller pill cases (like these – they’re purple! They also come in white or multicolor) that I visually don’t hate and can put both the prescription and over the counter pills in. I have 2-3 of these filled and ready to go at any given time, which makes it easy to grab one when I head out for the day, or to have sitting in different spots on my kitchen island/counter so I have the visual reminder in addition to my traditional “prescription” bottle.

The other aspect aside from decision fatigue is the stress of uncertainty around food. I took a trip recently and it was very stressful being out of my routine at home for the first time since we realized I had EPI. I had to take a lot of enzymes with me, take extras in case something happened to them, pack snacks, figure out food in advance but also be ready to figure out food on the fly. This included guessing what was in airplane (gluten free) food. On the first flight, I gave Scott my dry airplane chicken because it didn’t look good or even worth the PERT, and ate snacks from my bag instead. On the flight home, the chicken had a sauce (woohoo) and came with cheesy potatoes, so I rounded up my dose guess and things were fine. In between on the trip, I also erred on the side of caution and rounded up my doses.That meant I took a little more than usual, but I had already factored that into the amount of enzymes I had packed for the trip. So that went fine. But the uncertainty in what I’d be eating for several days was stressful and hard. To help work around that, I had picked a hotel near a gluten free bakery and near a gluten free restaurant that I knew from a previous trip, so that at least I could reduce the uncertainty of “is there anything celiac-safe (gluten free) that I can eat” (which used to be my sole concern when traveling) and limit myself only to the uncertainty of “what do I dose for this?” every time I ate. That helped. So I’ll probably continue to use the pre-planning skills I learned from living with celiac because the uncertainty at every meal for EPI is a lot, especially when jet-lagged, and so everything I can do to pre-estimate or pre-plan and make sure I have access to food pays off.

(As I mentioned at the start of this post, you can find my previous posts about EPI at DIYPS.org/EPI. And I’m working on a number of research initiatives related to EPI and improving methods for helping people titrate doses of PERT. If you’re interested in collaborating on research related to EPI, please reach out any time!)

AID (APS) book now available in French!

Thanks to the dedicated efforts of Olivier Legendre and Dr. Mihaela Muresan, my book “Automated Insulin Delivery: How artificial pancreas “closed loop” systems can aid you in living with diabetes” (available on Amazon in Kindle, paperback, and hardcover formats, or free to read online and download at ArtificialPancreasBook.com) is now available in French!

The French version is also available for free download as a PDF at ArtificialPancreasBook.com or in Kindle (FR), paperback (FR), and hardcover (FR) formats!

 

French version of the AID book is now available, also in hardcover, paperback, and Kindle formats on Amazon

Merci au Dr. Mihaela Muresan et Olivier Legendre pour la traduction de l’intégralité de ce livre !

(Thank you to Dr. Mihaela Muresan and Olivier Legendre for translating this entire book!)

Why it feels harder to dose pancreatic enzyme replacement therapy (PERT) than insulin

In 2002 when I was diagnosed with Type 1 diabetes, I struggled with being handed a vial of insulin and told vaguely to eat X amount of food and take Y amount of insulin. There was no ability to eat more and adjust the dose accordingly. It was frustrating. The only tool I had was a huge (imagine three iPhone 13 or equivalently large smartphones sitting on top of each other) blood glucose meter that took a lot of blood and a long time (a minute or more) to return a single blood glucose data point. The feedback loop wasn’t very useful, even when I tested my blood sugar manually 10-14 times per day.

Thankfully, in the last two decades, diabetes tools have evolved. Meters got smaller, faster, and take less blood. There has also been the devlopment of continuous glucose monitors (CGM) which I can wear and get near real-time readings of glucose data and can see what’s happened in the past. And, paired with an algorithm that also knows about the history of any insulin dosing on my insulin pump, and it can automatically adjust my insulin delivery in real time to predict, prevent, and reduce hypo- and hyperglycemia. (AID is awesome and if you haven’t heard about it, there’s a 4-minute free animated video here that explains it.) Diabetes no longer is quite the headache it was twenty – or even ten – years ago.

But realizing that I have exocrine pancreatic insufficiency (known as EPI or PEI) and learning how to take pancreatic enzyme replacement therapy (known as PERT) is a similar headache to diabetes in 2002.

With insulin, taking too much can cause hypoglycemia (low blood sugar). Taking too little can cause hyperglycemia (high blood sugar). Yet, with diabetes, you can measure blood glucose and see the response to insulin within a minutes-to-hours time frame. You can also use an insulin pump and an automated insulin delivery system to titrate and adjust insulin in real time.

However, for EPI, you need to take enzymes (that your pancreas doesn’t produce enough of) to help you digest your food. Your pancreas makes three types of enzymes: lipase, to help fat digest; protease, to help protein digest; and amylase, to help starches and carbohydrates digest. These are taken by mouth as a pill that you swallow. Together in one pill, it’s called “pancrelipase”, and it’s for pancreatic enzyme replacement therapy (PERT). (I’m personally bad about using pancrelilpase/PERT interchangeably, because PERT is faster to say and type, but it is possible to use standalone enzymes in PERT).

Because they are pills that you have to swallow when you eat, it’s hard to dose. Taking too little means you may have GI-related symptoms in the hours following the meal and feeling bad until the next day or so. Taking too much is expensive, although unlike insulin it’s rare to take “too much” and cause bad side effects (although possible at super high doses). There’s also the “pill burden”, because swallowing a bunch of pills is annoying and sometimes hard, both physically to swallow and to remember to take them throughout your meal.

You also can’t take more hours later if you forgot to take them or realize you didn’t dose enough for that meal. If you underdosed, you underdosed and just get to experience the symptoms that come with it. Sometimes, it’s not clear why you are having symptoms. Because there are three enzymes being replaced, it’s possible that the dosing was off for any one of the three enzymes. But again, there’s no measurement or feedback loop, or a sign that appears saying “you underdosed protease, take more next time”. The best you can do is try different sized meals over time with different doses of PERT, trying to reverse engineer your lipase:fat and protease:protein and amylase:carb ratios and continuously update them as you have new data.

It’s a lot of work, the feedback loop is slow, getting it “wrong” is painful physically and psychologically, and there are no vacations from it. Everything I eat, now that I have EPI, needs enzymes, and given the fact that I have automated insulin delivery to help manage insulin dosing, I am finding PERT to be a lot harder and more annoying (currently).

A comparison of dosing insulin and dosing enzymes. Insulin can cause hypo- or hyperlgycemia but there are tools (CGM and BG meters) and a feedback loop in diabetes. With enzymes, there is no fast feedback loop and underdosing is common. There is no ability to correct an underdose and there are multiple variables that can influence the outcome.

There’s no happy ending to this post, but this is one of the reasons why I am so interested in partnering with researchers to do research on EPI. There are a LOT of improvements that can be made, ranging from improving titration guidance of PERT to testing the efficacy of different over the counter enzymes to finding new technology that might begin to provide a feedback loop into EPI (either for short-term assessment or longer-term use for those who prefer it). If you’re someone interested in this type of research, please don’t hesitate to reach out (Dana@OpenAPS.org).

(PS, if you didn’t see them, I have other posts about EPI at DIYPS.org/EPI)

Feeling hunger for the first time in two years after discovering Exocrine Pancreatic Insufficiency (EPI or PEI)

Now that I’ve been taking pancreatic enzyme replacement therapy (PERT) for a month and a half for my newly discovered exocrine pancreatic insufficiency (EPI), I’ve not only discovered that the GI symptoms I had are gone, but I’ve also gained something back: the sensation of hunger.

For two years, I’ve struggled to eat. I found a breakfast that I could eat that was higher fiber (albeit nontypical American breakfast food) and kept me full for hours. So many hours that I didn’t feel like eating at lunchtime.

Essentially, I would eat breakfast and maybe one other meal, and occasionally a snack. Far from three meals. I learned quickly that eating just because other people were eating made things worse (worse symptom severity, plus gave me more symptoms), so I studiously avoided eating just because that’s what I had done in the past or that’s what other people were doing.

Figuring out I had EPI and starting to dose PERT was a relief. I could tell from symptom reduction that it was working. And within a week or so, I started to feel hunger multiple times a day! Now I’m more regularly eating three small meals a day, and sometimes more (especially on after long runs). My meals are more likely to be a little bit smaller due to how I’m titrating my PERT dosing, so that plus my activity levels plus actually digesting my food when I eat it means that I’m eating more often now than I have over the last few years.

The only downside is that my brain is VERY unfamiliar with the sensation of hunger, and despite knowing I will not starve or even be hungry for very long, there seems to be a switch after three minutes where I go from recognizing hunger and starting to think about doing something to having already passed the point of no return where my number one priority becomes eating.

The timeline of my body becoming hungry (0 minutes), my brain recognizing hunger (1 minute), thinking about eating (2 minutes), deciding to eat (3 minuntes), and then a flip switching and I go from wanting to NEEDING to eat as soon as possible.

I’m guessing this is what toddlers feel like, and I have a lot more empathy for their hanger now after experiencing this! And like toddlers, hopefully my brain re-learns how to deal with and moderate the feelings of hunger soon.

(PS, if you didn’t see them, I have other posts about EPI at DIYPS.org/EPI)

How I calculate fat and protein for pancreatic enzyme replacement therapy (PERT) dosing in homecooked meals

As I’ve been re-adding food items to my diet now that I know I have exocrine pancreatic insufficiency (EPI), I’ve been eating a lot of packaged foods with nutrition labels that are quick and easy to read. I’ve done a few meals that are takeout from a restaurant, and certainly the ones from chain restaurants with nutrition labels online are the easiest to enable me to optimally dose my PERT. (But not all restaurants, including my new favorite local taco place, have them and so I also do quite a bit of guesswork and experimenting.)

I’m now at the point where I can eat some onion and garlic and other FODMAPs again (yay!), so a lot of the homecooked meals I used to love to make – especially crockpot meals – are back on my list to try. This week I decided to try taco soup, a longtime favorite that involves cans of black beans, corn, dark red kidney beans, light red kidney beans, cooked ground beef, tomato paste, and ranch and taco seasonings.

One of the reasons I waited to cook large meals until this point in my EPI discovery experience was to save my energy for figuring out the fat and protein per portion size.

I’ve been creating a tab in my PERT enzyme tracking spreadsheet that’s labeled “ingredients”, and I’ve been listing commonly used ingredients (e.g. an egg, 1/4 cup of cheddar cheese, 1/4 cup of parmesan, 1 cup of milk) that I often add to my food and repeatedly need to add to my nutrient totals. I listed out all the ingredients for my taco soup recipe (see above), looked up the fat and protein and logged those, then added them all up for what one giant crockpot full of taco soup would be. That’s 44 grams of fat and 177 grams of protein.

(Side note – I found that Impossible ground beef tastes the same as ground beef and ends up being lower fat and protein. I was going to use it anyway, but that makes it easier to dose PERT by slightly reducing the fat and protein quantities.)

Then, after I cooked it (truly, set it and forget it), I scooped out a cup at a time to estimate the number of cups. For my current crockpot, it was about 12 cups.

So to figure out the taco soup individual serving size, I take 44 and 177 and divide each by 12, so it’s about 4 grams of fat and 15 grams of protein per cup of soup. I usually eat 2 cups at a time, so multiply by two to get the total of what I’m needing to dose PERT for, which is 8 grams of fat and 30 grams of protein. That’s *just* at my 1-PERT limit (at my current dosing)  for protein and well under my 1-PERT limit for fat (also about 30 grams), so I was able to cover 2 cups of soup with 1 PERT pill.

However, were I to add 1/4 cup of cheddar cheese, as I sometimes do, I’d need to add on additional enzymes to cover the protein. (It’s frustrating that I’m this sensitive to protein, enzyme-wise!)

This is also what I’ll do with potato soup (another crockpot favorite) and any other recipes that I make. Like diabetes tasks, I’ve found that splitting up the work whenever possible makes a difference, so I’ll list out the ingredients and look up the data and determine the total recipe counts separately from when I cook it, and from when I measure out how many servings there are and arrive at the final serving math.
An overview of the process of adding up fat and protein for all ingredients in a recipe; cooking and counting out the number of portions, then dividing the fat and protein totals by the number of portions (I use cups) to determine how many grams of each per serving and determine how much PERT to dose.

(PS, if you didn’t see them, I have other posts about EPI at DIYPS.org/EPI)

An example of the challenges of (constantly) titrating pancreatic enzyme replacement therapy (PERT)

As someone new to EPI who is also new to figuring out how to optimally dose my pancreatic enzyme replacement therapy (PERT), I’m constantly balancing the cost of PERT from prescription enzymes against the cost of over the counter enzymes.

I’ve personally calculated that one pill of my current dose of PERT covers about 30-4o grams of fat, and 30 grams of protein.

Meals with more than 30 grams of protein get 2 PERT pills, but meals with more than 40 or so grams of fat could be covered by 1 PERT pill and some OTC lipase.

But not all meals come with nutrition information, which makes titrating PERT at every single meal a challenge.

And, now that I’ve realized I’m likely not sensitive to all FODMAPs after all (hooray, although I may still have some slight sensitivity to massive amounts of onion or garlic), I’ve been able to eat a lot more takeout food from restaurants, both enthralling my taste buds and challenging my brain trying to estimate how much fat and protein there is in what I am choosing to eat.

I’ve been keeping careful notes of what I’m eating along with my fat and protein estimates and the results following each meal. Then, if I want to repeat or alter a similar meal, I can use my data and results to guesstimate my next PERT dosing.

For example, we have a local taco place that has done a really good job to enable online ordering with gluten-free and celiac tags in the order, so you can order digitally without having to talk to humans at the store. A few weeks ago, I ordered 3 tacos and some queso dip. It was delicious. I estimated it was more than 30g of protein, so I took 2 PERT with it.

However, while I didn’t have post-meal immediate symptoms, my next-day results were slightly off, and I made a note that I probably needed a little more lipase the next time I had that quantity of tacos.

Yesterday, I ordered 3 tacos again but decided to try a small “street corn” appetizer instead of queso. Corn is less fat and protein than queso, but I figured there was still >30g of protein from tacos like from before, so I took 2 PERT. This time, due to my notes, I added a few lipase to cover additional fat.

I had no immediate post-meal symptoms and felt great! However, today indicated that I did not have enough enzymes, and I’m suspecting that it’s because I swapped one of my taco types. Last time, I had a shrimp taco, but this time I tried a lamb taco for my third taco type. Even with the reduced fat and protein going from queso to corn, the increase in fat and/or protein (likely the protein, given my extra lipase) from shrimp to lamb meant that my meal was not optimally dosed.A gif showing three tacos and queso plus 2 PERT got ok results, but next time I swapped queso for corn and added lipase and still got it wrong, likely due to increased fat and protein in lamb instead of shrimp in one of the tacos.

 

Next time, I need to pay closer attention to what kind of tacos I eat as well as whether I get queso or not. If I did the same meal (three tacos, one of which is lamb, and corn), I’d probably experiment with 3 PERT to cover the suspected increased protein that I was missing with the 2 PERT + extra lipase. If I went back to a shrimp taco and queso, I’d probably re-try 2 PERT + extra lipase again.

PERT dosing, like insulin dosing, involves a lot of experimentation and some art, and some science, to try to get it right (or better) every time.

(PS, if you didn’t see them, I have other posts about EPI at DIYPS.org/EPI)