Pancreatic insufficiency ..No cause?

I, too, have recently been diagnosed with EPI after about 2 years of nausea, vomiting, and diarrhea. I had a hiatal hernia surgery about 2 years ago, complicated by an esophageal tear. I he ave been told that the surgery had nothing to do with resultant gut problems and EPI, but I think that the surgery is related to worsening of both. It is good yo have a diagnosis, and I am currently using Creon, but still need 2-3 Imodium daily to stop diarrhea currently. I am 80 years old, and have had gut issues for about 30 years.

I had no previous pancreas issues, so it does happen.

Same, I was diagnosed with EPI in 2021 with a Fecal Elastase test after a million other tests, and tons of scans. I was on the diet prpartring for the SIBO breath test recently, stuck with it, and m,y digestives issues hae imporoved dramatically. Odd, but am waiting to diucusss this iwtht eh doctor in April at my next apointment.

I started noticing steatorrhea (and fat soluble vitamins deficiency), pancreas pain after the food, especially fatty ones. So started using pancreatic enzymes with main dishes and it helped to easy the pain despite that officially my lipase, elastase and proteas are just slightly elevated as per blood test. The criteria they come up to diagnose the EPI is useless (detects only severe cases). These standards have been changing every 50 years due to diverse pancreatitis symptoms and many would argue that fecal elastase is also not the best identificatory of the disease (look it up at pub med).
Trust your body more than any doctors, if you feel better with external lipase for a fatty meal I wouldn't hesitate to take it.

I have the Pancreatic insufficiency and has been confirmed with the fecal Elastase test. I take Creon and that seems fine and puts the Fecal test back within limits, but now I lost have SIBO which is an intestinal bacterial overgrowth. I fight that with antibiotics but it keep coming back. I wonder if the SIBO is tied to the pancreatic insufficiency and has anyone else had similar problems?

I was just diagnosed with EPI after my elastase came back at 55.
I have had nausea, indigestion, bloating, belching, and GERD symptoms for 18 months. I started to find my diagnosis by doing a CT scan. It showed I had a subcenimeter cyst in my pancreas with no duct dilation or concerning features. My G.I. doctor did not think that was causing my symptoms. All my labs, including lipase were normal. EGD was normal, ultrasound showed I have a 6 mm gallstone in the neck of my gallbladder but there is no inflammation so they didn’t think that was causing my GI issue. I had an MRCP/MRI done and they couldn’t find a pancreas cyst and said my pancreas looked completely normal. I finally did the pancreatic elastase test a couple of months ago and it was 55. The thing is, I don’t really have any diarrhea and I’m not losing weight. I did start Creon last night to see what would happen and it gave me so much nausea. I’m kind of at a loss wondering if this EPI is what’s causing my symptoms. The only other test I haven’t done is for SIBO. But I’m scheduled to have that test in a couple weeks.
So frustrating.

Yes, very frustrating. I saw a doctor this week and he had a list of potential SIBO (IMO) causes. One was Pancreatic insufficiency. I’m fighting the battle as well and am trying a few different things other than antibiotics including the extreme low FODMAP diet. Various FODMAPs seem to have conflicting info, so it is difficult to know what really works. I know it is difficult to get sufficient calories on a low FODMAP diet to minimize gas and not lose weight. Going through the low FODMAP diet and trying various things to see what triggers the gas. Taking a good Fiber supplement seems to help me for the motility. Good luck.

I was diagnosed with EPI after having diarrhea for five months straight. Gastro Doctor did not tell me any numbers after testing, just that I did not have one kind of insufficiency but another. He called in a prescription for Creon. I looked it up and saw that it has a porcine cell base.
I am fairly sure that I am allergic to Pork, my diarrhea started when I had ham for Christmas after many years of never eating the stuff. Apparently all of the Pert medications are porcine based.
I do not know what to do. The caution is to not use any of these drugs if the possibility exists. Does anyone have this complication?
I suspect I got this because I had stomach cancer and lost the entire stomach 10 years ago. Pancreas has probably been working overtime for ten years and has just worn out!

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.

@hopethereisnothing

I’m 49 and I’ve been going through this for 6 years now. Shuffled from doctor to doctor, all blood and fecal tests point to EPI, except the perfect pancreas. Creon did nothing, and in the first years it almost seemed to come and go. They kept going back to maybe a 20 year old gastric bypass as well. This year, I had such terrible pain I was hospitalized with “acute pancreatitis”. Once again tests showed elevated levels, but no cause found.

Okay here’s the part where I caveat a moment… in these last years I’ve been having multiple none related issues pop up, all that are equally frustrating because all with no known cause. So my primary doctor who also is frustrated and I have been researching and brainstorming, and have 2 possible reasons that we are in the early stages of getting diagnostic tests done. The first is an often unrecognized EPI “mimic” from Vagus Nerve damage. I had multiple neurologists say that’s not a thing, but there is a lot of research on it on the NIH and other reputable sites. The other diagnosis possibility, for me at least, is a genetic condition (not hereditary I don’t think) called hATTR. It has multiple components including cardiac, kidney, musculoskeletal, neurological, and eye related diseases. Both are treatable… so hope is good. Though I may have taken too long to figure it this out for me, look into it and don’t be discouraged.

I’ve been my own advocate, cheerleader, and researcher for years. After so many years of this I’m exhausted, and wasting away, and am not sure if anything will matter by the time it gets diagnosed now. But I have been at this for almost a decade, I’d think, if I paid closer attention early on. Before this I was pretty vibrant and attractive, and now I look like a skeleton… I’m 49 years old! I have two young kids, and I’m almost positive I’m going to die in the next year. I honestly can only hope that some definite diagnosis might happen before then in case it is genetic, then maybe my kids might not have this same hell to go through, and maybe neither will you, if this out of left field idea helps you. Good luck- and FIGHT!