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Pancreatic insufficiency ..No cause?

Posted by hopethereisnothing @hopethereisnothing, May 16, 2023

I wonder if anyone has been diagnosed with pancreatic insufficiency, withput having pancreatitis or any other organic pancreatic disease ..does it happen ?

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bebstein | @bebstein | Sep 25 12:52pm
In reply to @lillymarie71 "Im 53, just diagnosed with EPI & Collaganeous Colitis. I was having diarrhea soo bad, soo..." + (show)
Profile picture for lillymarie71 @lillymarie71

Im 53, just diagnosed with EPI & Collaganeous Colitis. I was having diarrhea soo bad, soo much in June. The urgency & a few accidents sent me to the gastroenterologist. I've had bloodwork, stool test, CT scan with & without dye, colonoscopy. My elastase was 10. No known cause yet. Never had pancreatitis, no diabetes, no celiac. I am supposed to have an MRI & more blood work! I think I've had this for at least 5 years. I went from having IBS with constipation to chronic diarrhea. I had a colonoscopy 5 years ago. I told my doc then, I have diarrhea daily 2 or 3 times & he said, "you don't have diarhea". He retired & soo far happy with the new one. I wish I advocated for myself better! I knew something was wrong. I'm kinda disappointed that I have not lost weight. Currently I am taking Zenpep.

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@lillymarie71
I too, had gastroparesis and constipation. Then I developed Collagenous colitis and EPI. I also have Sjogren’s disease, which I believe is a contributing factor. I share your pain. I am on Budesonide for colitis and Creon for EPI. My diet is mostly low fodmap. It is a balancing act to determine the correct amount of the two medications to get me to a stable and comfortable place. Since I have Sjogren’s, I lack saliva. Saliva contains amylase. Without that I can not macerate food before swallowing.

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diamondback2k9 | @diamondback2k9 | 3 days ago
In reply to @hopethereisnothing "Thank you all for your replies. As I see most responders are in the 70 s..." + (show)
Profile picture for hopethereisnothing @hopethereisnothing

Thank you all for your replies. As I see most responders are in the 70 s of age or older so EPI could be related to age. This doesn't apply to my case, I just turned 40 and my symptoms started 15 months ago. I have recently been diagnosed with prediabetes so this could be related. I haven't found any explanation for my symptoms so far. Even EPI is just a possibility, according to symptoms (excessive gas, chronic diarrhea, abdominal pain )but not a defintive diagnosis as I haven't had the elastase test ( very expensive where I live).

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@hopethereisnothing

I am only 38 and have EPI. It's hard dealing with it. All my blood work is normal and CT scan was normal. My Glucose was high but I wasn't fasting when they took the test. It's hard dealing with this. My GIndr said more and more younger people are getting this likely from the junk in diets. My stool elstate test was 200 when I was diagnosed. It's now over 800 on creon.

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dianehrdr | @dianehrdr | 2 days ago

I too, have no apparent cause of EPI. I have a healthy lifestyle of over 40 years, low alcohol intake, high level of exercise, again for all these years. I have however, always had constipation (since childhood).
Prior to my symptoms and eventual diagnosis, I had covid and soon after, became symptomatic.
The covid virus attacks weak places, particularly organs in the body, perhaps I was vulnerable, but so far, no one has been able to determine the cause.

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cyn0748 | @cyn0748 | 1 day ago
In reply to @diamondback2k9 "@hopethereisnothing I am only 38 and have EPI. It's hard dealing with it. All my blood..." + (show)
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@hopethereisnothing

I am only 38 and have EPI. It's hard dealing with it. All my blood work is normal and CT scan was normal. My Glucose was high but I wasn't fasting when they took the test. It's hard dealing with this. My GIndr said more and more younger people are getting this likely from the junk in diets. My stool elstate test was 200 when I was diagnosed. It's now over 800 on creon.

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@diamondback2k9 200 is very borderline, and the FE1 test isn't especially reliable for borderline cases. And your higher score is normal. Are you sure you have EPI? Avoiding the hassle and cost of PERT might be worth having a second opinion.

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