I was diagnosed with EPI: Need advice on diet, other management

Agree with all you have written. It has taken about a year for me to figure out what I can and cannot tolerate; it differs from person to person. While I can tolerate peanut butter (my salvation for calories so I don't lose more weight), peanuts cause my Pancreas to hurt. I am pre-diabetic, so also fighting that progressing to full blown diabetes, and following low carb. It is difficult to keep weight up while on a low carb diet. All carbs definitely are not the same and while I can tolerate 20 grams steel cut oats glucose wise, a slice of Dave's killer bread or Ezekiel, which only contain 15 grams per slice, shoots my glucose up very quickly. This is all very time consuming and requires intense study to balance, but I have CREON and it could always be worse. Ddelighted I found this group. Any other dietary suggestions would be greatly appreciated.

Hi! Does anyone have a source for suggested dietary changes to make EPI more manageable. I'm finally on Zenpep, after insurance put me on less expensive ones for about a year, even though GI doctor prescribed Zenpep since it had worked beautifully when she gave me samples to try. I'm interested in food that will be healthy for me to consume with this condition, as I hope that I can get my digestive system back to a close to "normal" state.
Thanks a lot, and Peace to you all.

The typical recommendation is to eat a low fat diet and smaller, more frequent meals to make this condition more manageable. I was diagnosed with EPI along with Collagenous Colitis in the Fall of 2023 and take Creon for the EPI. I don't know how the dosing for Zenpep works, but with Creon I take two capsules with each meal: one with the first bite and the second about halfway through my meal. Creon (along with the Budesonide I continue to take for the colitis) has been a total game-changer and I am able to live a mostly normal life - although I do have to be careful about what I eat.

I was put on Creon for EPI and NOTHING for collangeous colitis. Was told my colitis was minimal. Diet is hard especially if you eat lasagna or any type of casserole. I like a glass of wine every once in a while. What do you do about that?

Oh, wow - you're the first person I've come across who has the same combination of diseases I have! I continue to drink a glass of red wine on weekends but only with meals, and with no apparent ill effects. I have found that I feel better if I avoid gluten and tomato sauce, and raw veggies other than lettuce are really difficult for me. Try gluten-free noodles - they're more expensive but taste almost as good as wheat-based noodles. Good gluten free bread is hard to find so I started making my own using a recipe for Artisan Bread on the King Arthur Flour website. They have a gluten-free bread flour that contains deglutenized wheat starch and the taste is very good. Beans are a challenge, too. I digest them better if I soak dried beans for at least 24 hours before cooking them, and then limit how much I eat. When you were diagnosed with collagenous colitis, did your doctor do a Fecal Caprotectin test on a stool sample? That measures how much inflammation you have and if the result was low enough may be why you were told your colitis is "minimal" and not prescribed any medication. When I do indulge in something that will likely set off my colitis, I'll take an Immodium at bedtime to avoid diarrhea.

Yes my GI doctor did the stool calprotectin test which came back at 365 and should be under 50. He also did the pancreatic elastase test which should be greater than 200 snd mine was 52,thus the diagnosis of pancreatic insufficiency. I found the doctors no help with diet. Had to pay myself for a dietitian who put me on a 1400 calorie diet, and suppose to eat only 30 grams of fat, 35 degrees of fiber, snd 68 grams of Protein. I am not overweight. Use to be 128pounds snd am 5’9” tall. Have lost weight, now at 118, but holding steadying.
I do fine with breakfast and lunch but find dinner difficult if you eat good like lasagna and casseroles. Going back to dietician in two weeks.

Hi, I’ve also been diagnosed with EPI and am starting my medication finally! Am not on Facebook but could do with some advice can you join Facebook privately for just this page? Thanks

Yes you can. The group is Living with EPI. You have t ask/apply to join. It is open to all who have EPI or a caretaker. It is a great, understanding group. My GI gave me no info and this helped me tremendously.
Good luck!

I totally understand that. I too have diagnosed with severe EPI but given no diet options. Trying to figure it out from online info. I basically eat no dairy, no meat, no yeast. It’s been pretty difficult to stop losing weight. I hope you’re doing better at keeping weight on.

Hello. I also have EPI as well as SIBO and lactose intolerance. I also take Zenpep as well as some other digestive enzymes. Have you tried eating lean meats like 93-99% fat free ground turkey, white fish or lean chicken breasts? I do okay with these but fattier items like salmon hurt to eat and result in steatorrhea. I’ve found I can no longer tolerate high fat content foods like mayonnaise, avocados or nuts. I bake a lot of zucchini, yellow squash and spaghetti squash with salt as my seasoning and use that as my base rather than bread or pasta. It is hard to maintain your weight though due to limited calories as well as malabsorption. My registered dietitian has me on protein shakes made by OWYN.
Hope this is useful. It is lonely when you can’t easily eat out or what you prepare for others in the family. But I’m not going to lean in to the negative side and choose to thank God for the blessings in my life. I try to steer activities to things I can do like movies, book clubs, walks, board games, pedicures, etc.
Take care.