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

Hi, do you mind my asking how did they determine that you have celiac disease? What tests were done? Thanks

The definitive gold standard test for diagnosing celiac disease (gluten intolerance) is a biopsy of the intestine.
https://celiac.org/about-celiac-disease/screening-and-diagnosis/diagnosis/

Thank you. That’s what I thought. I asked my gastroenterologist if we should test for celiac since I’m having a colonoscopy in January but she said she doesn’t go into the small intestine but she ordered two blood tests instead. I read and told my doctor that I read that if a person has been avoiding gluten then the test won’t be accurate. She ignored my comment and I did the blood test anyway.

I have slowly enlarging small BD-IPMN with double ducts dilated and enlarging. Now I have EPI and for the last 3 years pain/discomfort in upper right quadrant and my liver enzymes are fluctuating between high and normal. I also had Uterine sarcoma cancer stage IV in 2006. Knowing all the above is making me feel that I could possibly have cancer but I wanted to check whatever other possibilities could be causing some of these things. I guess celiac probably isn’t very likely in my case.

Are you taking a pancrealipase like Creon, Zenpep, Pancreaze or others for the EPI? If so, are you finding it has helped in normalizing your GI tract functioning or are you having issues with diarrhea and characteristics of the stool that are associated with EPI?

I was taking over the counter pancreatic enzymes made from porcine but they stopped working so i asked for a prescription. The prescription is for Zenpep and a very low dosage compared to my over the counter. The prescription has been tripled but im still having problems. I just requested another increase in strength. The difference now is that the diarrhea happens after I eat and might only last a day or two and then I have one to 3 days without diarrhea before the process repeats. Stool is consistent with EPI description (sticking to toilet, greasy).

After I was prescribed Creon at a starting dose of 24,000 lipase units, I optimized the amount I needed for a specific meal by keeping a daily food journal. The starting dose was calculated using the formula provided by the manufacturer which is based on the patient following the recommended diet predominantly non-fat and low fat. Although the dosing calculator Abbvie has saying for my body mass (120-130 lbs), I should take one 36,000 capsule, the 24,000 capsule has been satisfactory for most meals as I stick to non-fat and low fat fairly consistently.

By keeping a daily food journal noting day/time, type of meal, quantity and fat content and then noting the GI symptoms and stool characteristics 24-40 hours later (the time it takes for food to be digested and excreted by an adult), I quickly identified what meals (fat content, portion size) required more pancrealipase. It did take long to optimize as I kept to a consistent diet the first month. Slowly I began increasing the quantity of type of foods which included some additional fat. Already having a good idea of what was working, it became easy to extrapolate when to add more pancrealipase capsules to keep the GI tract functioning normally.

An oily sheen and stickiness of the stool is likely caused by undigested fats indicating more enzyme is likely required. When taking capsules, I take my first capsule immediately Before or after the first bite and then stagger taking additional capsules throughout the meal. This keeps a consistent level of enzymes in the intestine available to digest the target substrate (carbohydrates, fats, proteins). By staggering, it more closely resembles how a fully-functioning pancreas works which produces and secretes enzymes in response to food entering the intestine and sending a signal to the pancreas by way of releasing a hormone that binds to receptors in the pancreas that more enzymes are needed.

If optimizing by increasing the number of capsules to the maximum suggested by the dietitian is not achieved, the manufacturers and dietitians suggest trying a different Rx brand. Although all the Rx brands are derived from porcine pancreas, they differ in performance within and between individuals as a result of how the enzymes are extracted, processed, purified, concentrated, the time-release coating used and binders and fillers added. For these reasons, one should evaluate different brands if the first one does not perform optimally. I also stick to recommendations of PanCan.org and dietitians of avoiding fats, red meat in moderation and the vegetables that are hard to digest.
https://letswinpc.org/managing-pancreatic-cancer/2019/10/09/pancreatic-enzymes-explained/
https://flatulencecures.com/vegetables-that-cause-gas/
http://media.pancan.org/pdf/patient-services/booklets/Diet-Nutrition-Booklet-Digital.pdf

Thank you for posting this information. I will try especially staggering during a meal.

I’m on Pertze and doing well except I have to wk g hard to keep on wt, partly bc my family are all sort of thin. Constipation is my big issue. Does that go along with EPi?

I have IBS C and now ÉPI which has led to lose of weight. Can’t keep weight on - any suggestions? Low fat just leads to more weight lose.

Is the C for constipation? If yes my gi said that goes along with EPI. I have awful problem with C but it may be due to some food poisoning I had in mid 90’s - damage to wall of colon which could’ve caused scarring. All these Yrs I’ve not know why I have this stubborn C until my gi told me it is prob related to the food poisoning. The chronic C has caused SIBO which is addl set of problems. And I have had Fibromyalgia 23 Yrs. Pretty miserable life.
Can u eat Walnut Butter and rotate it with Pecan Butter? They are high in calories. You will need to take two or three Pertze’s plus one or two HCL capsules for sure so u can absorb the carbs, fats and protein in those butters.