r/exocrinepanins

I was diagnosed with idiopathic EPI a few years ago and have been on Creon since and it drastically helped me. My elastase level was 59 when I was diagnosed.

I wasnt happy with the care i received by the GI that diagnosed me and recently sought out a second opinion because ive still been having GI issues along with other health issues that I believe all start in my gut.

Well my new GI doctor had me do another stool test and my elastase level is now 500, which means I likely dont have EPI.

She said that the less solid the stool is when tested the less accurate it will be, ans high dose enzymes will be helpful for anyone with digestive issues regardless if they have EPI or not.

I tested positive for one of the celiac disease genes and will be doing the gluten challenge for 4 weeks (ive been gluten free for about 10 years, but not strict about it) and then will be having another endoscopy and colonoscopy to see if she finds any other abnormalities and test for celiac disease.

All this to say, trust your gut and if the diagnosis doesnt sit right with you, keep pushing for further investigation.

I realize this may not be the case for everyone, but I just wanted to put my story out there because I knew that there was something else going on, and I am glad I decided to get a second opinion.

3 years ago I went in for chronic diarrhea and a doctor told me the that the only abnormal lab I had was Fecal Elastase, which measured 170.

This led to a CT scan, EUS, Colonoscopy, and lactulose breath test. It led to me seeing 3 different doctors, and it led to Creon.

Nobody agreed on whether or not I had EPI. Imaging results didn’t show pancreas damage. I was positive for SIBO so they gave me rifaximin, but that didn’t help. Neither did the low fodmap diet. By this time I had Epigastric Pain on my left side that radiated to the back (I still do).

Last year I went to a functional medicine doctor, who repeated fecal elastase as part of the GI Map (this was following a year of figuring out my diet to some extent and stopping Creon as instructed by a GI) this time it was 279.

Having tested positive for both types of SIBO and continuing to have symptoms, I went on the Elemental Diet in March of this year. That definitely did something. On the rebound, I was pretty constipated for a week. Then I saw some very healthy looking poops. I continued to eat low fodmap, but my poops slowly started to revert back to being yellow with a slight oily sheen on the surface of the water.

The gas never came back as badly and the poops never went back to floating. What did come back was the nagging epigastric pain.

Now I mentioned that Creon never helped me in the past (nothing ever improved with Creon). I had a bottle of it lying around, so I decided to start taking it again at half the dose I used to take. It seemed to significantly decrease the epigastric pain.

I wanted to repeat the Fecal elastase test, so I did.

Lo and behold, my fecal elastase was 517….

I really don’t know what to make of all this. I know the FET is not always accurate and can fluctuate, but that is a huuuge fluctuation.

If I was going off symptoms alone, I would be reaching the conclusion that SIBO was preventing Creon from working, and now that I’ve cleared the SIBo I need to treat EPI as the root cause (Use porcine enzymes to maintain the correct gut environment to surpress bad bacteria) however the FET results really add an extra confusing layer to that.

Anyone else have the experience of FET results normalizing even when they’re pretty sure something is wrong?

I’m 32F with severe EPI. I read somewhere that pain is not a hallmark symptom of just idiopathic epi and now I’m worried. I have upper left/center under the rib cage pain. But it’s not excruciating by any means. It feels like trapped gas and occurs after eating. Like today I had breakfast/lunch with Creon and was fine, and I thought a fat free smoothie (with fat free yogurt) would be fine, but it wasn’t. It’s almost like a pain that I can shift, or if I lay on my stomach and the gas comes out I feel better.

In the morning too, as soon as I wake up I have cramping. It feels like a diarrhea type of cramping, except, I can even have normal stools and have this cramping.

I’m not sure if this is all EPI or if something else is going on.

Hi hi, super new to this whole thing. I’ve read some threads and everyone seems super helpful so I figured I’d give it a shot. Apologies, it’s a long one!

Recently diagnosed with EPI after an assault of tests and finally a low FE coming back to confirm. It took 8 weeks (due to multiple docs telling me it was a gastro bug and being on a million antibiotics that did little to nothing) to get me on Creaon 25000 (one with each meal/snack as recommended by the diagnosing GI doc).

It’s been 3 weeks since starting it, and I’m struggling. A week ago, I tried with eating smaller small meals and therefore going from 3 pills a day to 5 per day, I’m still man-down with constant cramps, extreme bloating, and my stool is either okay or full blown diarrhea. The Creaon has helped marginally. I also had a gastric sleeve surgery 7 years ago, so I already eat teeny meals, and really strictly so as not to upset my stomach. I’ve also been doing as much as I can to stay on top of my stress, but I’m uncomfortable 24/7, none of my pants fit, on top of running to loo after meals and just feeling really, really defeated. I know everyone isn’t a stranger to the costs of Creaon, so this making me panic a little.

I guess my question is, how long should this go on before I feel some improvement? Or will it always be this way and I just need to buck up?

Some advice or even a supportive comment would go a long way for me. Thanks in advance x

I had Vertical Sleeve Gastrectomy 5 years ago. Started having severe oily diarrhea every time I ate any fat 8 months ago. Finally saw gastroenterologist. FE 169. Calprotectin stool 28. He prescribed Creon 48,000 units TID with meals.

I am on Medicare including with Humana Part D Plan. Looks like covered (TIER 3 with 25% copay) until max out of pocket $2100. Then zero cost to me until next year. 90 day supply is $1600 which puts me max $2100. I guess I can't complain too much as this isn't like some others. But still tight on just SS.

I have been eating almost fat free for months which helped control steatorrhea. But I guess long-term not a solution. I have received 3 annual RECLAST infusions for osteoporosis.