Exocrine Pancreatic Insufficiency

Posted by jlmp @jlmp, Dec 24, 2023

Diagnosed one week ago and SO many questions. Prescribed very expensive Zenpep. Can I eat as normal while taking these capsules? Need info on dosing, foods I can eat without dosing, etc. Doctor no help with this. He just says take one capsule before a snack and two before a meal.

Interested in more discussions like this? Go to the Digestive Health Support Group.

robincat99 | @robincat99 | Nov 5 8:49am

In reply to @penelope52 "First you need to see a nutritionist who specializes/has experience with this issue. There is a..." + (show)

@penelope52

First you need to see a nutritionist who specializes/has experience with this issue. There is a lot of information on the internet. Your pancreas is not producing sufficient enzymes to digest the food in your stomach when eat, thus the Zen pep/Creon/Panarese, etc. In addition to the compromised digestion, which causes malabsorption issues, you possibly face nutrient deficiencies. My personal instructions were: include, daily, vitamins K/A/D/Coq10/E/B complex/Good multi. Most of these are absorbed better with some kind of oil in your meal. Even taking all these, I still had a ferritin (part of your iron) and B2 deficiency, which manifested in my tongue and it has taken three months of supplements for those to clear, not to mention the medical tests to rule out oral disease of some kind. The iron deficiency developed due to not eating beef or pork. You are advised not to eat pork or beef, as they are harder to digest than chicken and fish and can cause extra stress. I eat a lot of vegetables, dried beans, grains, avocado. Have found that raw vegetables. slaw, salad do not digest well for me, so I only eat cooked foods, or experience pancreas discomfort while the raw items digest. Eliminate processed foods - fast food, chips, candy cakes, canned soups, frozen foods, sugar, as little processed as possible. These have little nutritional value and are harder to digest. No fried foods. I use Daves Killer and Ezekial breads, as they (especially Ezekial) have more nutritional value (for store bought bread) than most of the others. If you aren't familiar with Ezekial it is found in the frozen section, due to lack of preservatives and I thaw, and keep, it in the refrigerator. I use Vegenaise instead of mayo, Violife plant butter and cook with only olive oil. Eat a lot of tune and salmon salad and have a vegetable soup I make and freeze, so I always have something on hand. Have a crustless quiche each day for breakfast, with broccoli, peppers and onions

All of this information is trial and error for ME and working with a nutritionist. I am also pre-diabetic, so my diet is a little more restricted on the carb side. This diagnosis can be overwhelming at first, as they all can, but when you start working with it, you will figure out what works best for you. Good luck and find a good nutritionist and read medical articles about this disorder.

Jump to this post

This is an excellent post. I was recently diagnosed with EPI and meeting with a nutritionist who understands this condition was essential. Most nutritionists deal with diabetes and weight problems. I also have Celiac Disease - CD has a much higher rate of EPI than the general population.

Most of the information I have gained about this condition has been from reading medical journals (my background is in traumatic brain injury and vestibular dysfunction - so I am fortunate and have access to medical journals). One thing I found out - which none of my doctors told me is that the medication for Hasimoto's thyroid condition interferes with L-Thyroxine. I changed the timing of my L-thyroxine to late at night - 4 hours after eating.

It is interesting to see how many people on this thread note that their physicians were not much help at all. I found the same thing - and it has been extremely frustrating.

For many people, reading medical articles - if you are not accustomed to these types of articles - can be intimidating. But it really is essential to understanding EPI - because we cannot rely on the medical community for our own health needs.

robincat99 | @robincat99 | Nov 5 8:53am

In reply to @karmacoolee "Hi I just joined I was diagnosed with EPI 10 years ago I took the Zenpep..." + (show)

The biggest mistake people make when diagnosed with EPI is going with a FODMAP type diet. Low fiber is essential - and avoid dairy.

Work with a nutritionist. Also, know that all the medications for this disorder likely need adjusting for each patient. Creon did not work well for me - I am still working my dosages and when to take my medication.

Make sure too that you get regular check ups for pancreatic cancer - as anyone with EPI is at very high risk.

robincat99 | @robincat99 | Nov 5 8:56am

Is anyone else struggling with friends and family regarding changes to your diet? Many of my friends are 'Foodies' and it is difficult to get together because they are always focused on food and drink. This for me has been one of the most difficult issues with my EPI diagnosis.

merveaksoy | @merveaksoy | Nov 6 4:26am

In reply to @robincat99 "Is anyone else struggling with friends and family regarding changes to your diet? Many of my..." + (show)

Same here. Even my husband tells me to have some wine because he wants to drink with me. Friends arent much different either. They insist occassional cheats wont hurt.

slkanowitz | @slkanowitz | Nov 6 10:31am

Just a FYI on this subject. I now have a 4th member of family with EPI (myself, sister, 2 nieces), which anecdotally supports the notion of a hereditary tendency. 2 of us have type 2 diabetes, also linked to EPI. It does make sense that correcting ampullary stenosis (stricture) might correct the EPI.

mari | @mari | Nov 6 2:56pm

In reply to @karmacoolee "Hi I just joined I was diagnosed with EPI 10 years ago I took the Zenpep..." + (show)

Vital
3. Take bite of food. Then Viral
Then eat meal
It saved me. Three a day

geegeebabe | @geegeebabe | Nov 9 8:57am

In reply to @jlmp "Following. After googling (my only source of information) I think Creon and Zenpep are pretty much..." + (show)

First, did your doctor tell you how much to take? You should be taking enzymes with every meal and snack. Take one pill after your first bite of food, then space them out with the rest of your meal. Most doctors say to take one with snacks. It takes time to get the dosage right, so if you are still have no relief after a few weeks, let your doctor know. There is a great support group on Facebook, they have files that give more accurate info compared to anything you can search for online. Most Gi doctors don’t give patients much information, and we struggle with what we should be doing. Remember, the enzymes are a replacement for what your body no longer makes, not a medicine that will cure this illness.

geegeebabe | @geegeebabe | Nov 9 9:04am

In reply to @merveaksoy "Same here. Even my husband tells me to have some wine because he wants to drink..." + (show)

Alcohol is the last thing you should be drinking. One of the groups of people that end up with EPI, are alcoholics. Maybe a glass of wine one a year may be ok, but be aware of the consequences. Keep in mind, that this illness is different for everyone, what food I have trouble with, you may not. However, excess fat in our food is a trigger for everyone. Other things can upset your gut randomly. What is okay one time may not be ok the next. It’s trial and error. For those of you afraid to eat, don’t be. The enzymes will help. Yes they are expensive, but you can see what offers the manufacturer gives you to help override the costs.

mari | @mari | 6 days ago

Is there Any research going on about Pancreatic Inefficiency?

creondave | @creondave | 6 days ago

I have EPI, I am not sure I would call going on a FODMAP diet a mistake; within a week I was significantly better. I randomly get better, and worse with all symptoms that range from severe constipation and suddenly having sudden uncontrollable diarrhea. It is a pretty extreme thing to deal with and disrupts sleep, work, rest, you name it. But the FODMAP, rosemary oil, and Creon helped.

On Creon, and it seems to work, taking Rosemary oil before each meal (CVS in America seems to have the cheapest, I have found). Also, on D3 and a B multiple vitamin. Taking Miralax every other day helps reduce issues of constipation, which in turn leads to less severe issues of bowel leakage.

EPI seems to be very different for each person. I have found it to be hellish but there are also periods of time where life is almost normal.

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