New to exocrine pancreatic insufficiency (EPI): What helps?

Thank you for helping us all get connected so we can share helpful info!! Mrs Neal (irret2)

I am grateful to have found someplace to read others experiences and share my own. As a librarian, I can find lots of research about all of these diagnosis, but it is harder to find someplace to process my confusion and feelings.

I was diagnosed with celiac by endoscopy back in 2006 and have been strict with my GF diet since. In 2007 I decided to have Gastric Banding surgery and lost about 100 lbs. By 2015 the band had slipped and I had erosions - they released the restrictions, I regained the weight and then it was removed, revised to a gastric bypass and they removed my gall bladder (which was filled with large stones). I continued to have pain and didn’t lose a pound. Life goes on.

In 2019 I noticed pain getting a little worse, and other things like greasy stools, more gas & bloating etc. In 2020 I saw a gastroenterologist who basically ignored my complaint about the upper abdominal pain and figured my symptoms were probably from not following a GF diet (it’s common to be blamed for my ailments by new doctors due to my obesity). Summer of 2021 I went to the ER with severe upper left quadrant pain and the CT showed normal except for a slightly enlarged liver. Gastro ordered US- which seemed odd considering CT is more sensitive. It showed normal. His NP ordered a stool test and breath test finally and I was diagnosed with SIBO and EPI. She retired and my Primary Care said he would handle those.

Last week I had my annual with my PCP and told him I STILL have ALL of the symptoms. He told me I now have diabetes which meant my pancreas now has both endocrine & exocrine problems which concerned him. He also said my liver numbers had elevated to a new level. So he ordered an MRI of my abdomen and said I need a Gastro right away, even if I go back to the one who ignored me.

The radiology report says Chronic Pancreatitis which has me terrified. The moderate liver problem and mild upper gastric inflammation aren’t as concerning, although the combination of all has me worried about Autoimmune issues.

I am looking at Pancreas centers and trying to figure out who to see and what to do. I’m turning 53 in January and have way too much life left to let this bring me down. But I am scared, I am tired, and I don’t know what to do.

Thanks for listening.

Judy

OMG. This is the very first time I have heard any connection between gluten and the pancreas! I was diagnosed with Celiac in 2006, and EPI in 2021, Diabetes and CP just in the past 10 days! How come no doctor ever mentioned this?

Thank you! Now I will start more research.

You need to find a Gastroenterologist not long out of medical school. More is known these days about gluten’s effects on the pancreas- it happens bc we lack the enzyme to break down gluten and Gliadin. Gluten and Gliadin are a gluey protein I believe.

Ask for patient assistance from the drug manufacturer

Thank you for reply. I am a dinosaur & technology challenged have had hard time getting on. 1st 2 days just got black screen after seeing post from Coord. I know there r others hope I can get to them today. Previously saw bob name but cud not see post. U can’t all be pay $4k for Zenpep. Mon saw new dr rx for Creon that cost $1000 apologize 4 posting here as I’m afraid I’ll get black screen again. Has anyone had side affects from Creon & how did u get discount? Thx to all

Thx a million John will chk ur sites 4 costs & hopefully get rx filled today got creon down to $1000 but still on hold. Thx 4 giving me hope

Apply thru your doctor for Creon thru MyAbbvieAssist. If you qualify the manufacturer will provide free of charge. You must provide income and medical expenses with application. Your doctor will fill out his part and then fax it in. Even if you receive Medicare you can still qualify.

It takes about a week to get approved. Your doctor can give you samples to tide you over until you get from manufacturer

I was recently diagnosed with EPI and prescribed Creon this med has been wonderful for me. No side effects so far. I contacted the company and got help paying for this very expensive medicine.
I don’t know a lot about this disease but am trying to learn all I can with websites and help groups. Good luck on your search!