New to exocrine pancreatic insufficiency (EPI): What helps?

Welcome @mialeigh and @carolannd. I'm tagging fellow members living with exocrine pancreatic insufficiency (EPI), like @jewill @nanny23 @fourof5zs @lon @anniegk @ruble429 who can share their experiences with diet and taking enzymes either Creon or natural enzymes.

@mialeigh, have you considered consulting with a dietician or nutritionist who specializes in pancreatic disorders?
@carolannd, did your doctor recommend getting the enzymes you need through diet or with supplements, or both?

@carolannd actually mentioned natural enzymes in her post here: https://connect.mayoclinic.org/comment/749529/

I'm hoping she'll post more information about that option.

I will be seeing the gastroenterologist this Tuesday. I asked him to refer me to a dietitian or nutritionist regarding a diet for EPI. I’m hoping he gives me this information then and a lot more information regarding the Creon enzymes and supplements that I should be taking. I’m wondering what you were referring to when you mentioned natural enzymes. Are there natural enzymes some people can take instead
of Creon?

Welcome @mialeigh and @carolannd. I'm tagging fellow members living with exocrine pancreatic insufficiency (EPI), like @jewill @nanny23 @fourof5zs @lon @anniegk @ruble429 who can share their experiences with diet and taking enzymes either Creon or natural enzymes.

@mialeigh, have you considered consulting with a dietician or nutritionist who specializes in pancreatic disorders?
@carolannd, did your doctor recommend getting the enzymes you need through diet or with supplements, or both?

Hello, I have just found out about my having EPI but no inflammation and my doctor said I could try a more natural enzyme regime as I am mostly vegetarian. Has anyone else had experience with enzymes other than the pharmaceutical ones?

Also, I am reading it is not good to have a high fiber diet? I eat mostly fruits and veggies and legumes with some sheep cheese and yogurt. I always thought my diet was high fiber. Not sure what to do now?

I take supplements and a good daily vitamin so I seem not to be malnourished, if my blood work is correct. I have lost weight and have been dealing with diarrhea for a couple of months. Lots of tests including cat scan and colonoscopy and nothing remarkable seen.

I am so happy to find this group.
Thank you,
Carol

Hi @ruble429 and welcome to Mayo Clinic Connect. You'll see that I moved your post to this discussion: https://connect.mayoclinic.org/discussion/severe-exocrine-pancreatic-insufficiency-epi/
so you could connect with people like @lon and @anniegk
I know mayo currently has research papers out about EPI: https://mayoclinic.pure.elsevier.com/en/publications/staging-exocrine-pancreatic-dysfunction but not sure if they are taking patients for trials.
How long have you been diagnosed?

Hello, I am new to this board and I am looking to get any and all information on EPI. My husband for the past 2 years has lost 20lbs. He has always had a good metabolism and has always been on the "fit" low body fat side. The past 3-4 years he was diagnosed with diabetics type 2; AC1 6.6, but with diet he has been able to control the blood glucose levels and has lowered his A1C to 6.3. His weight in 2016 was 140lbs and he maintained this weight for a long time, but then in the last 2 years he started losing weight and down to 120lbs. His stools are always lighter in color as in lack of bile. Also in the last two years, his increase in bowel movements has gradually increased and more recently in the last 6 months he is experiencing loose stools. More recently in the past 3 months he has oily stools, but not foul smelling and very frequent. His recent fecal tests have shown severe endocrine pancreatic insufficiency and he is scheduled for a CT scan next week. He is not on any medications, feels great, and has no pain. He is going to start taking Creon too. My question is will the Creon help with weight gain and/or are there any other suggestions for weight gain? Since currently this is his biggest issue and he is at a low body weight. We are monitoring his vitamin levels and everything in his blood labs are relatively normal. I am just surprised Dr. is not recommending a specific diet and/or ways to gain the weight. I know we are still in the process of diagnosing exactly what is going on, but I wanted to know if anyone has similar experiences and can give me input on things I can do to get him on the right track fast.