EPI with no underlying cause

[Charlie_P]

Hello everyone.

Is there anyone here that has been diagnosed with EPI but no underlying cause has been established?

I have been doing all sorts of testing but they all come back negative. My CF test result was 58 so I did the genetic test to confirm whether I have CF or otherwise and that came back negative thankfully.

I will now be undergoing an endoscopy ultrasound next week to have a closer look at the pancreas and gallbladder since all my MRI, CT scan, ultrasound and HIDA scan are clear. I also did an endoscopy and colonoscopy last summer but they did not show anything either.

All I know is that my pancreatic elastase was 145 in June and went down to 129 in September. I did another test this week to see where it is at since despite taking Creon I am not seeing any significant weight gain. I am just not losing more weight (however I had already managed to stop weight loss naturally last summer by drinking fresh cabbage juice daily). I used to weigh 50/51kgs and went down to 43.2kgs at my lowest.

My gastroenterologist tells me that I am a very rare case and could potentially fall within the 20% of rare cases for which an underlying cause is never established (as indicated in medical literature).

Any form of info would be appreciated. I have had constant pain in my upper right quadrant (like sharp stabs or my lower right rib needing to be ripped out and it sometimes goes right round to the centre of my back) since the end of April 2024 and I really would like to have some sort of relief.

Thank you