Exocrine Pancreatic Insufficiency

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.

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.

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.

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.

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.

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

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.

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.

Is there Any research going on about Pancreatic Inefficiency?

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.