Pancreatic enzyme deficiency

DebE13 · Post by **DebE13** » Mon Mar 19, 2018 7:00 am

My husband ran across information about EPI and said it sounded like me. I decided to ask my GI to test it and he was agreeable. We took a break from each other after six months of many medications that only made things worse for me. His next step was a pill endoscopy to rule out crohns in which I asked to postpone due to the cost and that I just had and upper endoscopy and colonoscopy this fall. I'm thankful he is willing to entertain my grasping at straws.

I read the test results can be inaccurate with anything less than a normal stool since it would be diluted. I asked the nurse about this since I am still paying everything out of pocket to reach my high deductible. Not to thrilled to waste money if the test may be worthless. She said it wouldn't matter.

I see my results are posted on my account this morning:

PANCREATIC ELASTASE 127
Reference range: >=201
Unit: ug/g
(NOTE)
The specimen submitted indicated possible watery diarrhea.
Because watery stool is inherently dilute, low test results
should be interpreted with caution. Retesting on formed
stool is recommended.
REFERENCE INTERVAL: Pancreatic Elastase, Fecal by ELISA
Greater than 200 ug/g ........ Normal
100-200 ug/g ................. Moderate to mild
pancreatic insufficiency
Less than 100 ug/g ........... Severe exocrine
pancreatic insufficiency

I am not able to produce a formed stool or anything even close to it. I joked with my husband that maybe I need to get bit by a tick again since that was the only time in almost ten years I had a normal stool. Lymes and Norman... go figure.

I'm looking for opinions about my results. I haven't heard from my GI yet but I am thinking I should at least be able to try enzymes to see if it would help. Right? If my sample was diluted the possibility of my number being lower than reported is likely. ???? Which would then put me in the "severe" category. Am I missing something? I am not sure what the cautionary statement about interpreting low results with caution means.

I'm hoping something productive will come out of this test but am cautious about having any hope.... my bathroom habits are no longer as they used to be with MC. I was classic.... in the bathroom 6-8 times in the morning and I was good for the day. It's hard to remember how long but years I think- I am frequently in the bathroom after eating. It can be as little as ten minutes but usually within an hour. I also make visits to the toilet before bed and knock on wood, have been good with no night issues since I stopped all the medications my GI was testing.

Any thoughts on my situation would be appreciated.

Post by **tex** » Mon Mar 19, 2018 2:20 pm

I believe you are misinterpreting the results. Look at it this way: Because of the watery diarrhea, your sample was diluted. If it were not diluted, it would have been more concentrated. A diluted sample always tests low. If it is diluted by twice as much water as normal, then whatever you are testing will show a result that's 1/2 of normal. In that case the actual result would be twice as high as the test showed.

And that's probably what happened in your own case. Your pancreatic elastase level is much higher — probably in the normal range.

That's why they say, "Because watery stool is inherently dilute, low test results should be interpreted with caution."

But it shouldn't come as a surprise if your pancreatic elastase level happened to be low, because many of us have pancreatic insufficiency when we are reacting. The pancreas is part of the digestive system, and it often becomes inflamed when the rest of the digestive system becomes inflamed. It's another side-effect of MC, unfortunately. For most of us it's only a transient problem, but when diarrhea if intractable, it can be a persistent issue.

Tex

DebE13 · Post by **DebE13** » Mon Mar 19, 2018 3:22 pm

Well sh**...... !

I prefer my reasoning since with that justification I would have some hope of solvong a problem.

That's disappointing but good since lifelong pills and pancreatic problems don't seem that great. From what I read so far, it isn't just an easy fix by popping a pill when you eat. It is a bit frustrating though because I specidically asked the nurse if the test would be a waste of money since I onky have WD.

Thanks for the explanation Tex, I'm sure they won't explain it very well when I do get a call.

Is there any harm in trying porcine enzymes to see if it changes anything? My D has been for about ten years, no remission so could it help? Not that my GI will agree with try it and see what happens but there isn't much left. Unless I go ahead with the pill endoscopy, I am at a dead end with my GI.

Is there a point when it is best just to accept that nothing has helped and just live with it? The continued inflammation just scares me- I don't need to develop additional autoimmune problems because I am not doing anything to get my WD under control.

Post by **tex** » Mon Mar 19, 2018 5:29 pm

I don't see why there would be any problem in trying it — it's just an enzyme and people are trying enzymes all the time. Who knows? it might help.

I'm like you. When I have a problem I keep looking for a solution until I either find it or I run out of possibilities to try. And then I look for some more possibilities to try. Thomas Edison was right — just because the first 10,000 things we might try don't work, doesn't mean that the next one won't work.

Everyone remembers Winston Churchill's famous words — Never give up!

Tex

DebE13 · Post by **DebE13** » Tue Mar 20, 2018 12:24 pm

Thanks for the encouraging words...... I want to give up but in the end I’m stuck in my shoes. I am a firm believer that if you want a helping hand, it’s on the end of your arm.

The nurse just called and said my GI is recommending a trial of Creon. I’ve tried many OTC digestive supplements that haven’t had any noticeable effect. Maybe this one will be different. Not overly optimistic but at least it’s a try. Not too thrilled to read the shells contain black and red iron oxide, sodium laurel sulfate and titanium dioxide. Although, if this prooves to end or lessen my WD- it’s worth it.

I would have to eventually deal with the fissure I have that has not healed but that’s a problem for another day.

Vandolyn · Post by **Vandolyn** » Fri Apr 06, 2018 7:55 pm

I have the same issue, Deb. My doctor prescribed Creon. It made the D worse. I stopped it after a few days. After Tex explanation, I am not going to worry about it.

Vandolyn

DebE13 · Post by **DebE13** » Sat Apr 07, 2018 5:30 am

I tried two weeks on the 12,000 pill with no real change. It seems there’s less gas but it’s not totally gone. One pill is a pretty light dose but it’s hard to tell since almost all the other people on it are taking it for other health issues so it’s hard to compare. My GI said to go ahead and try two pills with each meal for a week. I’m almost at the end of that time and there’s been no difference. I did try three pills with each meal for a day and there is nothing.

It was worth a try..... not sure what’s next, if anything.

Post by **tex** » Sat Apr 07, 2018 8:39 am

Well, at least you gave it a fair trial. When we're ruling out things, it's best to do it right so that we're not left wondering whether we gave it a reasonable trial. Thanks for the insight.

Tex