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.