Pancreatic Exocrine Insufficiency

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

by Dana Lewis

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.

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(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

by Dana Lewis

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.

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

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

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

by Dana Lewis

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.

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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.

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(PS, if you didn’t see them, I have other posts about EPI at DIYPS.org/EPI, including one about PERT Pilot, the first iOS app for Exocrine Pancreatic Insufficiency! It’s an iOS app that allows you to record as many meals as you want, the PERT dosing and outcomes, to help you visualize and review more of your PERT dosing data!

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

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A Do-It-Yourself Protocol for Over-The-Counter Enzymes for Suspected Exocrine Pancreatic Insufficiency (EPI) Before Gaining Access to Pancreatic Enzyme Replacement Therapy (PERT)

by Dana Lewis

A humorous side note – the title of this blog, DIYPS, stands for “do-it-yourself pancreas system”, the name I gave my first automated insulin delivery (AID) system, back in 2013. An AID system doesn’t fully replicate all functions of the pancreas, so we evolved from describing it as an artificial pancreas system (APS) to automated insulin delivery (AID). But now that I have exocrine pancreatic insufficiency and am doing quite a bit of DIY around titration of enzymes….the name of this blog feels more appropriate than ever.

After I started writing about exocrine pancreatic insufficiency, I’ve gotten a lot of questions from friends and connections who think they might have EPI. (And they are likely not wrong – there are estimates that as many as 40% of people with type 1 diabetes have lowered elastase levels. Alone, that doesn’t indicate EPI, but if symptomatic and you’ve already ruled out celiac and gastroparesis, it should be (in my opinion) high on the list of things to test for. Ditto for other types of diabetes and anyone with celiac disease.) Some people, though, may have delays in getting doctor’s appointments, and/or clinicians who aren’t (yet) willing to order the elastase or other EPI-related tests without testing for other things first.

This post is for that group of folks, and anyone stumbling across this post who has seen their test results for their fecal elastase testing indicating they have “moderate pancreatic insufficiency” or “severe pancreatic insufficiency” and are wondering what they can do while they wait for their doctor’s appointment.

It’s also for people with EPI who are struggling to afford their pancreatic enzyme replacement therapy (PERT) or are limiting the number or size of meals they eat as a result of the cost of PERT.

A bit of background on why I did the math about OTC enzyme cost and why I had tested them myself

Due to the holidays in December 2021 I had a lag between getting my test results (over Christmas) and then confirming that my doctor would write a prescription for PERT, and then a delay in getting it filled by the pharmacy since they had to order it. One of the things I did during that time was read up a lot about PERT and also look to see if there were any other kinds of enzymes that would be useful to take if my doctor didn’t want to prescribe me PERT. I found out that PERT contains THREE types of enzymes, and together they’re known as pancrelipase. Pancrelipase contains lipase (helps digest fat), protease (helps digest protein), and amylase (helps digest starches and other complex carbohydrates). It’s typically made from ground up pig pancreas, which is one of the reasons that PERT costs so much. Amylase from non-pancreatic sources is not widely available for human consumption, but there are some other ways to make protease and lipase. And it turns out that these standalone enzyme versions, often produced by microbes, are available to buy over the counter.

While waiting for my test to be ordered, I went ahead and ordered a standalone lipase product that is over the counter (OTC). In part, that was because some of the reviews for lipase talked about having EPI and how they were only sensitive to lipase, and so this was a viable and cheaper alternative for them rather than taking PERT with all 3 enzymes, since they didn’t need that. Based on my experience with FODMAPs and trying an enzyme powder to target fructans (which did help me some), it seemed like trying small doses of lipase would help if I did have EPI, and likely wouldn’t hurt even if I did not have EPI.

And it helped. It didn’t reduce all my symptoms, but even minor doses (3000 units of lipase) made a noticeable difference in my symptoms and I got a sense for what meals were more fat and protein-laden than others.

As a result, when my test results came in and I was on the borderline for moderate EPI, I agreed with my HCP that since it likely wouldn’t hurt to take PERT (other than the cost), and it would be obvious if it helped, that I should try PERT.

So having done the tests with OTC (over the counter) lipase was helpful for deciding to take PERT and advocating for my prescription.

And it turns out, wow yes, I do have EPI and do definitely need PERT (more about my first two weeks on PERT here).

And as I wrote here, because I had the OTC lipase sitting around, even after I finally had access to PERT, I eventually titrated my dosing and calculated separate ratios for lipase:fat and protease:protein, so I can decide for every meal or snack whether I need one full PERT (all three enzymes), two PERT, a PERT plus some lipase (and how much), or just a standalone OTC lipase. The cost differs greatly between those options: one PERT might be $9 and a standalone lipase pill around $0.26. You can’t break apart a PERT (e.g. take only half), so adding a few lipase is a cost-effective approach if you don’t need more protease or amylase and the OTC lipase works for you.

Some of the reasons to explore over the counter enzymes with exocrine pancreatic insufficiency or a suspected case of EPI

One interesting thing about one of the main tests (fecal elastase) used to assess EPI is that it is NOT impacted by taking enzymes. Someone who is started on pancreatic enzyme replacement therapy (PERT) can still have an elastase test without stopping taking PERT. So if someone had an inconclusive result or was borderline and started taking PERT, but their doctor wanted to re-test again, the use of PERT would not affect the test. The same goes for other types of enzymes.

I’ve realized that the following groups of people might want to investigate various OTC enzyme options:

  • Someone who has been diagnosed with EPI, but has done careful testing with meals of various sizes (low fat & high protein, high fat & low protein, etc.) to determine that they really only need lipase, may benefit from cheaper lipase-only OTC options.
  • Someone who has a test result for EPI but doesn’t yet have an appointment with their doctor or a prescription for PERT could start taking some OTC enzymes for quicker symptom relief, even if they ultimately want to use PERT for all their enzyme needs once they get their prescription filled.
  • Someone diagnosed with EPI who cannot afford the ideal dose of PERT that they need for their meals and snacks, may want to calculate the out of pocket costs for OTC lipase (not covered by insurance) vs the cost of PERT with or without insurance.
  • Someone who can’t get tested for EPI, but suspects they have EPI, might want to also explore OTC lipase and/or OTC multiple enzyme products.

However, not everyone with EPI will want OTC enzymes. Some people may have great insurance coverage, so their PERT costs them less than $9 a pill. OTC enzymes are not covered by insurance, but I’d still do the math and assess what your standard cost is per pill, because it may surprise you how cheap add-on OTC lipase is vs. your insurance deductible or copay to take additional PERT for larger meals. The other reason some people may not want to take OTC enzymes is the pill burden: OTC doses tend to be smaller, so you usually need to take more pills to cover the same meal as a single, larger PERT.

Picking what enzymes (in general, or specific brands) work for you

I often see a variety of OTC enzyme products recommended in peer groups on social media for EPI. There are no studies that I can find assessing the efficacy of these OTC brands (meaning, how good they are). I would be very cautious when trying different single or multiple enzyme products and keep a careful log of your symptoms from before enzymes as well as symptoms at every meal that you take enzymes, and your bathroom results afterward. This can help you assess OTC enzymes as well as PERT if you get access to it. By having a good log of your symptoms, you can tell if you’re taking enough enzymes (OTC or PERT) or if you’re developing new symptoms (which could be a side effect of whatever brand/type you are taking).

There are multiple brands and sizes of PERT, too, and it’s possible that a filler product or how the PERT is made by one brand doesn’t work well for you. If that’s the case, you can try another brand of PERT.

The same goes for OTC enzymes: it is very possible some types of pills may be made with ingredients that could bother you and cause symptoms themselves. You should definitely be very cautious if you go this route and explore small doses and ensure no side effects (no new symptoms) before increasing any doses.

When I search for lipase, it’s easy to find standalone lipase (here is an example, as an Amazon affiliate link). When I search for protease, it’s more common to find products that are multiple enzymes (e.g. lipase AND protease AND other random things that are “good for digestion”). Personally, I’m very wary of anything OTC that’s described as “digestive enzymes” with additional ingredients and prefer to stick to products that only have the ingredients I’m looking for (lipase, protease, and amylase only).

A pro-con list for over the counter (OTC) enzymes for EPI. Pros include: lower cost overall and per pill; that you can take smaller quantities of individual enzymes; and you can buy them without a prescription. Cons include: it's not covered by insurance so cost is out of pocket; you have to take more pills with smaller amounts of enzymes; it's not regulatory approved so othere are no studies on efficacy; and providers may not be able to advise for titration.

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The amount of enzyme also matters

The amount of enzyme you take matters, which is probably the second place that people trip up and make mistakes when trialing over the counter (OTC) enzymes. For example, the starting dose recommended for people with EPI is 40,000-50,000 units of lipase. Some of the most common OTC pills have 4-6,000 units of lipase: that means taking 10 OR MORE PILLS per meal in order to get the starting dose. Could you do that? Absolutely. (10 x $0.26 means that is around $2.60 cost, which may still be cheaper than the prescription pills.) However, the burden of consuming that many pills is pretty high in the long run. But you might be ok with that in the short run. There are other OTC options like this one (which I do use myself) that has around ~17,000 units of lipase. They are more expensive per pill, but you have to take fewer (e.g. 3-4 pills per meal) to match the starting dose.

For a lot more info on dosing, read this post about the starting dose and how most people end up needing MORE enzyme than this amount. Then read this post about how to figure out how much enzymes you may need to adjust to the food you’re eating and end up with an optimal dose. (You can also use PERT Pilot to help you with that).

That’s an advanced step, though, so if you’re just getting started I would focus on getting the minimum starting dose (equivalent to 40-50,000 units of lipase per meal) and see how that goes, then titrate (increase) from there.

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In diabetes, we often say “your diabetes may vary” (YDMV), indicating that different people can have different experiences.

In EPI, it’s no different – “your digestion may vary” and it’s important to test and record and find what works for you, and to find a balance of reducing or eliminating symptoms with enzymes in a cost-effective way that you can afford.

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(PS, if you didn’t see them, I have other posts about EPI at DIYPS.org/EPI – including one about PERT Pilot, the first iOS app for Exocrine Pancreatic Insufficiency! It’s an iOS app that allows you to record as many meals as you want, the PERT dosing and outcomes, to help you visualize and review more of your PERT dosing data!)

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

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Cost calculations of Pancreatic Enzyme Replacement Therapy (PERT) for Exocrine Pancreatic Insufficiency (EPI) and alternative over the counter enzyme products

by Dana Lewis

I previously wrote about my experience figuring out that I have exocrine pancreatic insufficiency (known as EPI or PEI), and also a little bit about starting on pancreatic enzyme replacement therapy (PERT). I talked briefly about the method I was using to figure out the right amount of PERT for me, but I realize that there’s a lot more detail I could provide about how to titrate enzymes in general, and not just PERT.

Some background first, though. When I write about PERT (pancreatic enzyme replacement therapy), I am talking about the FDA-approved class of drugs (called “pancrelipase”) that contain THREE types of enzymes, which the FDA calls “pancreatic enzyme products” or PEPs. Pancrelipase contains lipase (helps digest fat), protease (helps digest protein), and amylase (helps digest starches and other complex carbohydrates). As of 2010, all pancrelipase products that are marketed for EPI must be FDA approved.

Any time I refer (here or in other blog posts) to other enzyme products (either single enzyme or multi-enzyme), I’m referring to over the counter products that are not FDA approved.

Why does FDA approval matter for PEPs? FDA approval is essentially a rubber stamp saying you can trust the FDA to have validated that the companies making these products are making them as they describe them, meaning if they say they have 25,000 units of lipase, they actually have 25,000 units of lipase in them. (And protease and amylase). FDA-approved PEPs used in PERT are made from ground up pig pancreas (really), which is why they’re expensive. There is no generic PEP or PERT. (FDA also has a nice page here explaining the importance of understanding what is and is not an approved PEP/PERT product, and it also explains the brands that are currently approved and the differences between them.) This matters because when you talk about the cost people will probably suggest a “generic” of PERT, but there isn’t one.

However, there are non-FDA-approved over the counter enzyme products. They do exist, but because they have not been vetted by the FDA, I (and you!) should be wary about trusting them when they say they contain X units of lipase or any other enzyme product. Additionally, there are no studies (that I can find) comparing the efficacy between over the counter enzymes (single or multi-enzyme products) and FDA-approved PERT. (If you have found such a study, please leave a comment!)

So does that mean you can’t take them? No, I’m not saying that. What I am saying is you should only try other products with enzymes if you are willing to carefully test and vet FOR YOURSELF whether they work FOR YOU or not. (P.S. – did I mention I’m not a doctor? This is not medical advice; for medical advice, talk with your doctor. Although, doctors may not be aware of the over the counter enzyme options either, and this post might be worth sharing with them as well).

Three goals for optimally titrating enzymes for exocrine pancreatic insufficiency

I have three goals for getting my PERT dose titrated well.

  • First, get enough enzymes (through PERT) to reduce all symptoms.
  • Second, test and assess my lipase:fat and protease:protein ratios so I can figure out how to optimally dose enzymes for new meals of different amounts of fat and protein.
  • Third, optimize for reducing cost with enzymes, through a combination of supplementing PERT with standalone lipase and/or using lipase for fat-only snacks.

Here’s an example of how you might consider vetting over the counter enzyme products, and using them to supplement your FDA-approved (and hopefully insurance-covered) PERT:

As I mentioned earlier, I titrated and found out that my current dose of PERT covers about 30-40 grams of fat and 30 grams of protein. Some individuals only need support in digesting fat (e.g., need only lipase), but I have found that my body also needs support in digesting protein. (However, I don’t appear to need much amylase for carbohydrates.) Therefore I am tracking what amount of fat and protein I am eating with every meal. A 25,000 (lipase) dose of my PERT also contains enough protease to cover 30 grams of protein. Sometimes, I eat higher (>30-40g) fat meals that mean I need more lipase. So I would need two pills of the current dose of PERT, because 25,000 only covers ~30-40g of fat (FOR ME).

But – what if there was another way to get additional lipase without needing a full second pill of PERT, if I don’t need the additional support for more protein for this meal?

Enter over the counter enzyme options. In this example, a single enzyme option for lipase. Here is an example (Amazon affiliate link) to a standalone, single enzyme lipase product that is available as an over the counter product.

I personally have experimented with using standalone over the counter lipase to supplement my PERT dose, for the reason described above (needing more lipase but not necessarily needing more protease or amylase). The reason I would choose standalone lipase has to do with cost.

PERT, being ground up pig pancreas, is expensive. There is no generic for PERT! However, there have been methods to develop lipase from microbes as well as other sources beyond animals. Thus, it is possible to have a standalone source of lipase that is a lot cheaper than PERT. How much cheaper? Well, the bottle linked above when I calculated this was $23.50 for 90 pills. One pill each contains roughly 3,150 units of lipase (again, caveat from above about trusting the amount in over the counter products). That means each pill ($23.50/90 pills) is $0.26 USD, and each 1,000 units of lipase is roughly $0.08.

This math is then helpful to compare the cost of PERT. Depending on the size of prescription PERT, you might see a prescription anywhere from 3,000 to 25,000 to 36,000 units (depending on the brand, they have different amounts, but they are all measured based on units of lipase). Using GoodRx, you can generally compare retail prices of medications, such as this search for 24,000 PERT of one brand (90 capsules) or this search for 25,000 PERT of a different brand (also 90 capsules). Both of them are in the ballpark (for 90 capsules each) of $700-900, so let’s use $800 for 90 capsules for simple math. The per-pill price is $8.89 ($800/90 pills). The per-1,000 unit of lipase cost depends on whether you are using the 24,000 PERT ($8.89/24) or 25,000 PERT ($8.89/25) option, but those are roughly $0.37 and $0.36 per 1000 units of lipase.

So if you were to consume a meal that was ~10g of fat above your current PERT dose, and you didn’t need additional protein support, it would be cheaper to add on additional lipase (at $0.08 per 1000 units of lipase) as a standalone enzyme product instead of an additional PERT (which is, per our estimates, ~$0.36 per 1000 units of lipase). You don’t get to break apart a PERT (It can’t be cut in half, for example), so the per-pill cost is the better comparison. Adding a 3000-ish unit lipase onto your meal to cover an additional 10g of fat costs $0.26, and a second PERT is $8.89.

Therefore, a meal that needs 28,000 lipase is cheaper as 1 PERT and 1 extra standalone lipase rather than 2 PERT.

This of course assumes you have tested the standalone lipase and found that it works for you. I personally have done so and found that standalone lipase of the brand I chose works for this purpose (there are many brands and sizes: again, test what works for you), so I can titrate my meals as PERT+lipase, or even take 1-2 lipase (depending on the fat content) for a snack that’s mainly fat. However, again, a caveat that I personally am sensitive to protein and am tracking everything that I’m eating, so I know my personal math very well. Typical PERT dosing and recommendations is to take “2 or more” for meals or “1-2 for snacks”, but that completely ignores how much fat and protein is in the meals, and might be significantly undertreatment or overtreatment for you.

Why does undertreatment matter? Well, you get symptoms. Those are no fun.

Why does overtreatment matter? Well, you can get constipation. (I haven’t had it, but it also doesn’t sound like fun).
A gif showing a square moving along a spectrum from "too little" to "too much enzyme". Too little enzyme and you have symptoms, not enough and you reduce but don't eliminate symptoms. Enough enzymes and you eliminate symptoms. Too much risks constipation.

My approach was making sure my meals were covered first with prescription PERT, then evaluating additional standalone products that I could use to supplement or replace PERT depending on what I was eating, so I could prioritize reducing symptoms and then for improving the cost required to achieve that.

There are other standalone enzyme products, including products containing multiple enzymes. If you join one of the Facebook groups for EPI, you’ll see people recommencing various names of enzymes for over the counter products. But again, you really should test things and see if they work for you. Read all the ingredients on any product you’re taking. A lot of times you can search for lipase and you’ll get a multiple-enzyme product. And that product may have additional ingredients or fillers that don’t sit well with you. You may even find that one brand of prescription PERT might not work for you, whereas another one does.

My suggestions include:

  • Carefully test any product, whether it’s PERT or over the counter enzymes. Keep a good log of your post-meal symptoms and next-day symptoms (e.g. bathroom results) and try different meals with different amounts of fat and protein.
  • If you have symptoms regularly with a certain amount of enzymes, it could be either that this particular brand (over the counter or even prescription PERT) does not work well for you, OR that you are not taking enough enzymes to cover your needs.
  • If in doubt, talk with your doctor. They may/not have opinions on over the counter products, especially if they haven’t had other patients reporting back what is working for them or not, since there are no studies on those particular brands (and of course, they’re not FDA approved). But with approved PERT, they should be able to give you some more input on how to increase your dose or change your prescription to adjust. Having the data on how much fat and protein you’re eating and what results you’ve been getting could help you (and them) get to a more optimal dose more quickly.

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

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

by Dana Lewis

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

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

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

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

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

And wow, was it working.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

by Dana Lewis

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

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

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

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

Background

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

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

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

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

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

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

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

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

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

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

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

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

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

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

More about my experiences with exocrine pancreatic insufficiency

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

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

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

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

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

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

Advocate for yourself

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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