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Can anyone tell me how they cope with EPI
I have recently been diagnosed with EPI and are taking Creon but the doctor hasn’t told me what I can and cannot eat I am researching that on my own. I still have diarrhea and would like to know what is considered a snack.
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Sorry for the diagnosis, i do think that if you dig around this site a bit you shall find it can be an excellent resource. Individuals willingness to discuss their issues can helpful i have discovered.
Find strings with EPI in their title, and also read the ones with SIBO since those with EPI seem prone to it.
@dt61 … it is a fact that most Drs prescribe NOT enough creon to start with! My previous Dr prescribed me a child’s amount. I have severe EPI which is usually the case with diarrhea. EX: a 180lb person should be taking 5 x creon 36,000 per meal. This Ex is from the Creon site this is the max. dose which is usually needed for severe. Severe is elestase below 100. Do you know what your elastase test number is? Be aware your prescription could reflect your “ideal” weight. Also you do not need to take creon when eating fresh fruit, apples , bananas , etc or fruit juices. There are a few sites that can give you some basics. My previous Dr office only did one good thing, the creon dose instruction…
“take at beginning of a meal take one mouthful of food then take your creon”. This works best to allow the creon to function. This way the creon will not get flushed out of your stomach. Creon is a delayed release med which starts to work as the food exits the stomach. To simulate what your body would naturally do.
Its a trial and i myself simply laugh at it all (that i have)these days. I literally can only digest scrambled eggs, nothing else (period) without paying an extremely bad digestive experience. I am beyond max dose on creon. Weight? once upon a time 2-3 years ago 160-170 for years, sometimes more.
Now 114-116lbs , 5'11".
I have had EPI for about 5 years. I also developed IMO-C, which basically is very high gas and constipation. My elestase number was 91. CREON is helpful but it only deals with certain food types such as protein and fat plus some grain. Suggestion:
1- Look at what foods CREON really works to help digest.
2- Ask your doctor to test for other enzymes (sucrase, lactase etc). I have other enzymes that are low and I use other types of enzymes readily available. Turned out that I have some trouble with Lactose and Sucrose (Creon will not help with these at all). Others that I use are Digest Spectrum, Starchway Pro, and Fodzyme, depending upon what I am eating. Typical meal for me is one CREON (36,000) + one Digest Spectrum and One Starchway Pro. There are some available for beans, fruits etc. There are no enzymes for “Sugar-Alcohols).
3-Be sure you hydrate - I do at least 64 oz of water per/day.
4- I also do 3 meals per day, 5 hours apart with no snacks - (nothing with calories).
5-Start with low FODMAP until you really understand your situation.
I now have a pretty normal life and can eat most anything I want, taking some enzymes (including CREON). I found that asking Chatbots (ChatGPT, Gemini, Copilot etc) to help pull data together as being very helpful but cross check info as sometimes they are wrong. Good luck.
Another thing FACT: Don’t try to be healthy by drinking non-dairy milks. Because they contain high amounts of Calcium Carbonate. It wrecks creon/zenpep abilities. It is also in most breakfast cereals. READ labels. Both creon and zenpep do work on carbs. I am T1D , If these meds didn’t help me digest carbs my glucose would get dangerously low all the time. W/O either of these meds I could not function. FYI- Calcium carbonate is a man made calcium. Creon says don’t eat foods high in artificial ingredients. This could be one reason why…