exocrine pancreatic enzyme insufficiency??? Anyone have it??

[irish]

I am in the process of having some testing to check for idiopathic pancreatic insufficiency which is also known as exocrine pancreatic insufficiency. I have had GI problems for many years and they have gotten worse. This past year has been pretty miserable at times with the symptoms.

I finally got sick of it and had a feeling it was related to autoimmune. I had a hydrogen breath test and am finishing the metroniadazole tabs given for infection in the small bowel. I have done a lot of research and found that infection in the small bowel happens often in people with the pancreatic insufficiency. There is one more test to be done and then I should have a better ideas about this.

I am wondering if anyone out there has it or is having issues. The treatment is pancreatic enzymes after meals. Anemia can be caused by this also and I am getting my 2nd and last iron infusion tomorrow for low hgb and ferritin level. I am hoping there is someone who can give me some tips. Thanks.

[Tharrell]

Hey Irish, yep, went through this. Mine was diagnosed by fecal fat stool test. I also had an ultrasound endoscopy to check the pancreas for inflammation which thankfully was negative. I took Creon with meals for a while, but it was making my nausea worse, so gastro took me off it again. At the second stool testing it was negative for pancreatic insufficiency. I still have problems with malabsorbtion. A good indicator for me is my dilantin blood test and my tsh blood test. Both show I'm not absorbing the meds properly. In the past year we had to increase my synthroid every 6 weeks  after having been perfectly stable for a year. I'm now on 300 mcg of synthroid and only weigh 120Lb at 5'8 on a good day. Both malabsorbtion and inability to take up enough meds have started about the same time. I have to make sure I never skip a meal or my weight drops!
I don't think the pancreatic insufficiency is gone despite what the stool test said. I can't do the breath test since I'm being treated for the m.kansasii lung infection, because I would have to be off the antibiotics for 2 weeks minimum and that's a big no no for another year.
Let us know the test results when you get them in!

[Nymph]

Any updates on this?

I am 99.8% sure that I have it after taking pancreatin for 3 months. Miss a day and it's back to a round of diarrhea. However, I have yet to gain any weight on it so that's a disappointment. Also I need to take Zantac if I take more than 3 in a day.

We were discussing this on a different thread and I can't seem to find it.

[Joe S.]

I may be misunderstanding this thread. Does this mean that you are diabetic to some degree? The symptoms you are discussing seem similar to the some of the symptoms I have experienced over time.

[Nymph]

Not necessarily. As I understand it, the pancreas secretes insulin from different tissue than that with which it secretes digestive enzymes (and they go to a different place, blood vs. small intestine). EPI has to do with the enzyme secretion. Those tissues are similar to salivary tissues. Of course I'm sure that it's possible to have both. I have no evidence of diabetes at this time, but I have had these digestive problems for some time.

[irish]

The pancreas manufactures and secretes several enzymes that are secreted into the intestinal tract and help breakdown our food making it more able to be absorbed into the blood stream. Because of this we have better nutrition in our body.

The Sjogrens affects the pancreas and prevents the formation of the pancreatic digestive enzymes. The pancreas is a secreting gland which makes it subject to being affected by Sjogrens. When we have the insufficiency of the pancreas gland we end up with the GI intestinal problems because our food is not being digested properly.

I have had increasing symptoms for the past 3 years or so and nothing weird ever showed up on my colon scoping. I have a new GI doc who is so awesome. In fact, she calls poop "poop" and is so down to earth and fun to talk to....and she listens. I had blood work and stool studies and the thing that did show up was that my pancreatic enzymes were on low normal side. She said that she sees people with Sjogrens who develop digestive problems after many years of illness and often they don't have big positive testing.

She ordered Creon which is a script and it was 270$ for 250 tabs. I had told her that if it was too expensive I would not buy it. I asked if I could buy an over the counter supplement and she said yes that it was no problem. I have been on am OTC that I bought at Walmart and I am having problems getting the dosage the way I feel works the best, plus it is hard to remember to take it every time one eats.

I do think the supplement is helping but know that I will be figuring the dosage out in the future. The doc had told me to take 1-3 pills with food. I am of the opinion that sometimes 2 pills is too much and always 3 tabs is too much. Time will be the judge.

As mentioned by an earlier post diabetes is not involved with this problem. The insulin is also produced by the pancreas but in a different lobe of the pancreas. Sooo, if any of you are having bowel/stomach problems and can't get them diagnosed you might be wise to have this issue investigated. It has taken docs some years to get the hang of the Sjogrens and how it affects the body and more is being learned every day. Good luck. Irish

[Nymph]

I just had my semi-annual rheumy appointment. When I mentioned that I had started taking these enzymes, and it had completely stopped my diarrhea (unless I miss a dose), she said that she has several Sjogren's patients who have experienced this. Well, I don't know why she never said anything before but I am very happy to have found the solution.

On a separate note...  clean bill of retinal health from my ophthalmologist! Five years of Plaquenil and no damage!!!   

[vrystaat]

I was diagnosed with acute pancreatitis 20 years ago, which turned in to chronic pancreatitis. I have been diagnosed as Autoimmune pancreatitis, which
is seen in Sjogrens. I am left with epigastric pain, diarrhea and fatty stools. My point is that all my Drs. fouled up the diagnosis until I went to a high-end medical Center.
Creon is much too expensive (thank you Big Pharma). Please buy "Kreon" in Canada (do a search on Google).

[irish]

My GI doc ordered Creon for me and I told her that I would not buy it if it was as spendy as I had heard. I asked her if I could use OTC pancreastic enzymes and she said I could. I take the ones from Walmart but plan to find a different brand when I can get out of town. I have researched them online and they all contain a different combination of enzymes and I want to find something a little different as it may make a difference. Also, the ones I have are hard to swallow. Irish

[Nymph]

I use the NOW brand. It is available from Puritan Prida and probably other online sources, and is also a common brand in healthfood-type stores, that could probably order it for you. It contains pancreatin 200 mg, rice flour, gelatin, magnesium stearate, and silica.

[Deb 27]

I   started taking some enzymes and they gave me diarrhea! I wonder why?? I was taking them just for optimal health and digestion. I am also lactose intolerant.

[Nymph]

Maybe they are the wrong ones for what you need? My mom takes hydrochloric acid, which is essentially stomach acid. She does not like the general enzyme combos, which I think lean more toward the pancreatic side of things. Maybe you can just start with some lactase and then reevaluate?

[irish]

If you do a search online asking about pancreatic enzymes you will find info about the enzymes secreted by the pancreas. When you check out the label on the pancreatic enzyme supplements you can compare the enzyme content to the body.

The pancreatic enzymes are not considered to be probiotic in nature. The pancreatic enzymes help the body break down the food when it is digested. This helps our body to absorb the nutrients. If we don't have enough pancreatic enzymes we can suffer from weight loss, diarrhea and loss of our nutrients or vitamins and minerals. We go into starvation mode when we don't have enough pancreatic enzymes.

There are some diseases that can have severe problems from lack of pancreatic symptoms. You might want to also look up symptoms of low pancreatic enzymes. I think that the Sjogrens can cause issues that are enough to be miserable in many of us. There are probably a few people who have really bad issues but it may be that the medical community hasn't identified these people yet. Good luck. Irish