Hi @skip522 - you are in exactly the right place. Welcome to Mayo Clinic Connect. You are participating in a discussion in the Pancreatic Conditions group called "I was diagnosed with EPI: Need advice on diet, other management."

If you want to look for other EPI discussions, do a search on the group home page https://connect.mayoclinic.org/group/pancreatic-conditions/, or start a discussion you would like to have on that same page.

Here is some Mayo Clinic information on autoimmune pancreatitis, including pancreatic exocrine insufficiency (EPI) https://www.mayoclinic.org/diseases-conditions/autoimmune-pancreatitis/symptoms-causes/syc-20369800.

Details on testing related to EPI are found on the Mayo Clinic Laboratories site https://news.mayocliniclabs.com/gastroenterology/malabsorption/exocrine-pancreatic-insufficiency/.

I'm hoping that other members in this discussion will chime in with thoughts on your losing weight despite eating 150 grams of protein daily, as well as how they manage the diet choices that work with EPI. Please meet @becsbuddy @joandelray @venture @pennie225 and many others here.

What has your doctor said about your weight loss? If they have given feedback and advice on that, what did they say?

@skip522 Hi. I am very recently diagnosed with EPI from a Fecal Elastase test. Since I’m also dealing with lung cancer and see a cancer dietician, he was the one who suggested the test due to my gastric struggles and he also asked my oncologist to prescribe Creon since my GI doctor wasn’t helping me. I want to suggest to you to see if your primary doctor can refer you to a dietician as my dietician is very knowledgeable about EPI and enzyme dosages. Also, Facebook has several private groups on EPI and you can find others there dealing with this condition and their experience has been helpful to me. I’ve only been on Creon a week but it’s going well but I continue to have guidance on Creon and food from my dietician. I hope this information helps you. - Rose

@skip522 gaining weight or regaining weight as in my case, requires eating more calories over the course of the day in small quantities, and always pairing protein with healthy fats and healthy fiber.

I eat every 2 hours as recommended, and choose easily digestible fats and carbs that should eventually lead to regaining weight. I’m 3 weeks post-Whipple.

Doctors are right regarding protein being crucial to regain lost muscle mass (hand weights recommended when able, and increasing the weight as you progress) but without healthy fats during same meal (like fish, avocados, nuts, seeds, olive oil, and dark chocolate) sufficient daily caloric intake, good carbs and fiber sources, not sure weight gain is possible.

Easily digestible fibers are soluble fibers, like oats (soaked overnight called “overnight oats” is the recommendation I’d go with to help break it down much better before ingesting), bananas, and apples. AI says: these fibers can help regulate digestion and are easier on the stomach compared to insoluble fiber.

AI: Insoluble fiber foods include whole grains, nuts, seeds, fruits with skins (like apples and pears), and vegetables such as broccoli, carrots, and cauliflower. These foods help add bulk to stool and promote regular bowel movements

Regarding the skins on fruits, although I haven’t had an issue with apple skin, make sure to chew sufficiently. Personally, I have always tested my body, unfortunately rushing through meals, eating fast and not thoroughly chewing my food. Today, however, is a new day. I chew my food as much as possible before swallowing. It takes effort and the goal to digest and keep the nutrients.

With regards to sources of protein: eggs are exceptional (I now have them every morning) along with a fiber source sourdough bread with olive oil butter cooked in coconut oil, a very good choice for healthy fat (a medium chain triglyceride) which can be digested without the small intestine. I eat chicken most every day too, but do not eat the skin as it is high in saturated fat. I do not want to test my pancreas on saturated fats and I might never do so. Ingesting saturated fats is not required to regain weight if you get enough of unsaturated fats.

I’m also struggling with maintaining weight, but my system is still adjusting post surgery.

From AI: Eating protein alone can lead to weight gain IF you consume more calories than your body needs, but it may not be healthy without fiber. A diet lacking in fiber can cause digestive issues and may not provide the same benefits for overall health.

I wish you the best and hope you found some of this info useful.

@skip522 Actually, you’re normal! None of us had ever heard of EPI, either! I’ve been dealing with it for a few years now. Creon 36,000 x2 pills with meals and 1 with snacks. I’m forever forgetting to take the pills, but I’m getting better. Once you get into the habit and learn to carry the capsules with you all the time, it will get better. I don’t think I can safely comment on the wt. loss and protein intake, because I never could understand it.