Exocrine Pancreatic Insufficiency

[Gemini]

There has been a lot of talk on here about taking digestive enzymes and I found this article on EPI that was very interesting and does a

great job of explaining what happens and who is at risk of developing it.  I use enzymes myself because I knew I had developed this condition from

long undiagnosed Celiac.  There is also a lsiting of other disease states which can cause this.

 

Open Original Shared Link

 

If you scroll down to the bottom of the page, it has a link that explains the link between EPI and Celiac Disease. 

[IrishHeart]

I just had this "discussion" with someone on another G F /celiac site and he was skeptical when I mentioned

there was a connection between pancreatic insufficiency and celiac and that using enzymes after diagnosis could help.

 

I posted the info, but he never came back to say "oh, I see!". 

(too busy trying to find a reason to argue, I suspect)

[NoGlutenCooties]

Very interesting!  Thanks Gemini!

[1desperateladysaved]

Now, if we just found out why the pancreas works over-time, and if this leads into diabetes with untreated celiac I would be interested in all of that too.

[powerofpositivethinking]

Since researching is my way of coping with things, here are several articles I've found very helpful in explaining celiac disease in connection with exocrine pancreatic insufficiency.

 

This is my favorite quote from the first article, "In contrast, decreased production of pancreatic lipase without glandular destruction is associated with Celiac sprue, Crohn’s disease, and Shwachman–Diamond syndrome."  That line can be found under the heading "Causes of lipid maldigestion and malabsorption."  No glandular destruction is definitely a positive   

Open Original Shared Link

 

Easy interview article that my GI doctor found very helpful with supplementation guidelines for enzyme dosing:

Open Original Shared Link

 

Article that discusses enzyme supplementation is most likely not needed long term for those with EPI and celiac disease:

Open Original Shared Link

 

Great chart that shows appropriate steps if enzyme supplementation isn't working:

Open Original Shared Link

 

Case study on celiac disease and EPI:

Open Original Shared Link

 

Treating EPI:

Open Original Shared Link

 

Italian study with a section devoted to celiac disease:

Open Original Shared Link  

I also liked this statement in the above article, "Enzyme replacement therapy might have an impact on glucose metabolism since it can reduce the insulin requirement and contribute to improved control of the glucose metabolism, but the evidence is contradictory as improvement of glucose metabolism was not seen in all studies."  It may be contradictory, but that makes sense to me!  

 

Other important info from the above article...seems all that money I've spent for coconut oil since it's a medium chain triglyceride may not have been the best spent, but this also explains why I feel better on a low fiber diet despite all the health claims that high fiber is the way to go.  

 

This is under the "Dietary and Drug Recommendation" section.  "Medium-chain triglycerides (MCTs) have not been shown to be effective in patients suffering from chronic pancreatitis with EPI. Moreover, their poor palatability and high cost reduce patient compliance. Evidence exists that MCTs also require enzyme supplements for proper digestion and absorption[Open Original Shared Link]. They should be used only in patients with persistence of symptoms or weight loss despite adequate enzyme supplementation[Open Original Shared Link]. Medium-chain triglycerides have been proposed in PERT non-responders as an “ultima ratio”. The quantity of energy administered by MCTs is limited (ca 8.3 kcal/g) and the dose must be increased slowly in order to achieve intestinal adaptation, even when using enteral nutrition[Open Original Shared Link]. However, trials have shown no advantage between a normal balanced diet and MCT-enriched preparations[Open Original Shared Link,Open Original Shared Link,Open Original Shared Link].

A diet rich in fiber content is contraindicated because the fibrous material will interfere with proteolytic and amylolytic enzyme activity; lipolytic activity is most affected[Open Original Shared Link,Open Original Shared Link], whereas enzymes contained in gastroprotected minimicrospheres can be assumed also with food having a pH less than 5.5. Acid-suppressing agents should be utilized only in patients who continue to experience symptoms of maldigestion despite the adequate administration of PERT[Open Original Shared Link].

 

After reading all these studies, it does make me think that there if EPI were treated in those with celiac disease, how many people would not have gone on to being diagnosed with diabetes after their celiac disease diagnosis?  I think testing for EPI after getting a celiac disease diagnosis should be a routine screening.  Just my thoughts 

 

Now, if we just found out why the pancreas works over-time, and if this leads into diabetes with untreated celiac I would be interested in all of that too.

 

I think the pancreas is working overtime because for years it has been trying to release enzymes to digest gluten, and it keeps releasing more and more enzymes in the hopes it will break the protein down, but it never succeeds.  I think that overuse causes burnout.

[Hala]

I have severe pancreatic insufficiency. I've had several stool tests done and they've all come back showing "completely undetectable levels of digestive enzymes". So by the sounds of it my pancreas has basically retired (although I don't seem to have an insulin problem).
I'm prescribed Creon to take with everything I eat, which has lipase, protease and amylase.

The GI doctors I've seen have all said that my EPI is down to my Crohn's disease, and is nothing to do with my Coeliac Disease...but by the looks of things it could be caused by either :S

[Gemini]

You are very thorough in your research, positive thinking! 

 

I usually read anatomy related books that explain the function of organs to find the information I am looking for.  When it became obvious that I was not absorbing fats, I looked into the possible causes and from what I have read, your pancreas may become atrophied because your small intestine can no longer send out the signals for enzymes, due to destruction of the villi. The pancreas is not being used so tissue atrophies, the same as what happens to muscle tissue.  Most of the time, you get that back when your small intestine heals on the gluten-free diet.  Sort of like lactose intolerance. I do not think there is destruction of the pancreas from Celiac but a malfunction.  Type 1 diabetes usually occurs because the autoimmune system attacks the Islets of Langerhans directly and this is where insulin is produced.

 

I still have trouble sometimes, depending on what I am eating, so use digestive enzymes when needed.....which isn't nearly as often as when I was healing but I still need it for a heaftier, fattier meal.  I was never tested for pancreatic insufficiency but sometimes, when the sympotoms are in your face, and the enzymes work well, you don't need to.

 

Off to read some of this information......thanks for posting this!

[dilettantesteph]

Thanks for posting this and all the links.  Does anyone have comments on comparison of prescription and over the counter enzymes?

[1desperateladysaved]

I have had good results (when using enzymes for my family) while using either prescription or over the counter enzymes.  My son has a prescription for Pancreaze.  This helped his growth to come back after he battled parasites.  He also is measuring 0 enzymes by stool test.  These are costing 104 dollars for a 4 month supply. I will post a link for this if I find one.  Open Original Shared Link

 

I have been using Genuine N zimes Dr. Howell's Original Formula Extra-Strength Degestive Enzyme Supplement.  I get 4 oz of this powder and it lasts me a couple of months at the rate of 1/4 tsp per meal.  The cost for this is 30 dollars a 4 oz canister.  I like that it is not a capsule, I feel it is more likely my body can always get it. The contents is Amylase, Protease, lipase and cellulose.  I looked into how the cellulose is derived before, but I don't remember.  I just know that I am using it successfully in spite of my many food intolerances.

 

I have found both the prescription and several health food store varieties work adequately   I recently discovered that (Even with insurance) I am paying more for the prescription enzymes, so I don't think I will bother with the prescription any more when I run out.  It could be an advantage if prescriptions can be paid with a health account.

 

Dee

[powerofpositivethinking]

I agree that if the symptoms are in your face, just go with it    I don't match up with the main symptom for EPI of unexplained weight loss, my main one is bloating.  Symptoms I've now determined are related...stool leaving streaks in the toilet bowl, undigested nuts and other food in stool, hard to wipe and stool sometimes floating though more often for me it does sink.  

 

It was determined after ruling out other causes that my EPI is all celiac related, so I was prescribed Creon.  My hope is that I follow my doctor's directions by eating a high fat diet while taking Creon, and that in a few months my body will remember how to digest food correctly!!

 

 

 

I still have trouble sometimes, depending on what I am eating, so use digestive enzymes when needed.....which isn't nearly as often as when I was healing but I still need it for a heaftier, fattier meal.  I was never tested for pancreatic insufficiency but sometimes, when the sympotoms are in your face, and the enzymes work well, you don't need to.

 

Off to read some of this information......thanks for posting this!

[Gemini]

I don't think having what would appear to be undigested nuts in your stool as a symptom of pancreatic insufficiency.  Nuts generally are not broken down completely because they are rich in fiber and hard to digest.  Your body will extract the nutrients out of them but the 'shell' will remain intact. Corn and peas are another example of this. The same thing happens to me but I do not view that as a problem.  Of course, if a lot of your food presents as undigested or whole on exit, that is something to be concerned about but not for things like nuts, seeds, corn and peas.

 

I am not sure I understand why you would be instructed to eat a high fat diet, along with your digestive enzymes.  I just stayed away from, and still do, those fats that bother me still. Those are the ones people should eat very seldom anyway...saturated fats.  I am fine with olive oil, butter in small quantities and even fried food, if it is done correctly at the right temperature so the oil doesn't saturate into the food.  Lower fat meats are good but I cannot digest lamb, period.  Not too hard to omit that from my diet anyway. Nuts and seeds I don't have a problem with.  I figured the longer I was gluten-free, I would heal and then just stay away from foods that are too heavy for my gut.  I only use the enzymes about 30 % of the time now, compared to all the time when first diagnosed.

 

I would not worry about this at all and continue taking your enzymes and heal.  It does take awhile for all this to happen, as you well know.  I was older, too, at diagnosis and have done fine.  So will you.  There may end up being foods that will never agree with you but that's OK.  I think that is just the norm for Celiac's anyway.

 

 

[powerofpositivethinking]

Although they are super convenient, the GI said EPI explains why I have a problem with KIND bars and nuts in general.  Since they are so high in fat and fiber, it was rough on my body and instead of a few pieces, pretty much the whole bar was in the toilet     

 

I had found a lot of conflicting information about high fat vs. low fat diet for those with EPI, and I know this was one of the articles he read which is why he instructed me to eat high fat: Open Original Shared Link

 

"Classically, patients with pancreatic exocrine insufficiency were instructed to restrict fat intake in an attempt to reduce steatorrhea. A diet containing less than 20 g of fat daily was generally recommended. However, restriction of fat intake is linked to insufficient intake of fat-soluble vitamins (which are already malabsorbed in patients with pancreatic exocrine insufficiency) and malnutrition. As a consequence, fat restriction is no longer considered necessary in the management of patients with pancreatic exocrine insufficiency. In addition, efficacy of enzyme substitution therapy has been shown to be superior when enzymes are administered together with a high-fat diet compared to a low-fat diet."

 

I just had my health screening for work, and found out my total cholesterol (145), LDL cholesterol (wouldn't register on the screener because it was so low) and triglycerides (registered on equipment that level is <45) are still low.  Thankfully my HDL is at a 57.  If there is one value that is good not to have low, it's that one    Last year I thought these numbers were great, but the problem was I wasn't on statins and I was not restricting fat or carbs, so these numbers should have been a red flag.  Live and learn 

 

Any type of fat...send my way!!  I went to Whole Foods and bought a large selection of oils, and I also have steak in my freezer.

 

Gemini, I completely agree that it takes time, so I just have to keep moving forward

 

I don't think having what would appear to be undigested nuts in your stool as a symptom of pancreatic insufficiency.  Nuts generally are not broken down completely because they are rich in fiber and hard to digest.  Your body will extract the nutrients out of them but the 'shell' will remain intact. Corn and peas are another example of this. The same thing happens to me but I do not view that as a problem.  Of course, if a lot of your food presents as undigested or whole on exit, that is something to be concerned about but not for things like nuts, seeds, corn and peas.

 

I am not sure I understand why you would be instructed to eat a high fat diet, along with your digestive enzymes.  I just stayed away from, and still do, those fats that bother me still. Those are the ones people should eat very seldom anyway...saturated fats.  I am fine with olive oil, butter in small quantities and even fried food, if it is done correctly at the right temperature so the oil doesn't saturate into the food.  Lower fat meats are good but I cannot digest lamb, period.  Not too hard to omit that from my diet anyway. Nuts and seeds I don't have a problem with.  I figured the longer I was gluten-free, I would heal and then just stay away from foods that are too heavy for my gut.  I only use the enzymes about 30 % of the time now, compared to all the time when first diagnosed.

 

I would not worry about this at all and continue taking your enzymes and heal.  It does take awhile for all this to happen, as you well know.  I was older, too, at diagnosis and have done fine.  So will you.  There may end up being foods that will never agree with you but that's OK.  I think that is just the norm for Celiac's anyway.

[powerofpositivethinking]

Wanted to add this PubMed abstract I found.  I couldn't access the full text, but it seems more light is being shed between celiac and its connection to pancreatic insufficiency.

 

Open Original Shared Link

[notme]

Wanted to add this PubMed abstract I found.  I couldn't access the full text, but it seems more light is being shed between celiac and its connection to pancreatic insufficiency.

 

Open Original Shared Link

i also read the link on this page saying that supplemental enzymes may or may not be a permanent thing - i'm afraid to try to eat without them lolz

[powerofpositivethinking]

i also read the link on this page saying that supplemental enzymes may or may not be a permanent thing - i'm afraid to try to eat without them lolz

 

I ended up being able to go off Creon about two months ago because my elastase testing went from 72 (indicated severe pancreatic insufficiency) up to a 414 (anything over 200 was considered normal), and things had been going really well!  Unfortunately I got glutened sometime last week...can't pinpoint it, and I'm still feeling the effects.  I ended up taking the day off work, which I never do, to just rest.  I know it will pass, but I can't believe I used to think feeling this way all the time was normal.

[Gemini]

I ended up being able to go off Creon about two months ago because my elastase testing went from 72 (indicated severe pancreatic insufficiency) up to a 414 (anything over 200 was considered normal), and things had been going really well!  Unfortunately I got glutened sometime last week...can't pinpoint it, and I'm still feeling the effects.  I ended up taking the day off work, which I never do, to just rest.  I know it will pass, but I can't believe I used to think feeling this way all the time was normal.

I know...isn't it bizarre that what you thought was normal was actually a serious illness?  I have a few years that I don't remember much about because I was so out of it.

 

The good news is that as time goes on and you heal more and more, recovery from a glutening happens much quicker.  I am at the 9 1/2 year mark gluten free and I usually am over a glutening after 3 days. I am getting really good at avoiding taking a hit but when it happens, I am not nearly as debilitated as I used to get.  Never a picnic but much better!

 

Hope you feel better soon!