Pancreatic insufficiency ..No cause ?

Me, I was diagnosed with exocrine pancreatic insufficiency a few months ago. I do not have pancreatitis. My doctor thinks the cause is either previous gastric bypass (23 yrs ago) or Sjogren’s Syndrome.

I have this since my surgery for a ruptured appendix. I have had CT scans and my pancreas is in perfect shape yet my fecal elastase is 72 which is considered severe. ZenPep and Creon don’t help. All doctors just look at me and say nothing.

I also shown to have it by 3 day stool test sent to Mayo for results that showed the insufficiency. I went from 178 1/29/2020 to 153 in 7/5/2022 then to 145 by Oct 2022; HOWEVER the scales @ different Dr's offices were rarely the same and my own scale showed more accurate readings so I am sure my weight had been lower all along until I got a better/consistent scale.

i was placed on 12,000 Creon in Oct/Nov of 2022 but was not given or told about any specific 'diet,' so I ate anything I wanted and actually ate more than I ever ate in many months tho I did stick to grass feed beef burgers, chicken and many generally often recommended foods while still eating ice cream, chocolate (freak 4 it!) halfn'half in coffee, while taking choc cupcake for snacks 2-3 times a day or a few thin slices of Aldi's apple pie (apples seeming to have a settling effect on my digestion) both with small amt of 2% milk and/or even some thin slices of cheese Danish on some days.

When I went to Gastro on 1/4/2023 I weighed 147 – 147.6 and actually had gained 2 or so lbs so I asked if I could maybe cut back on the Creon from 4 to 3 times a day to see what would happen and he said 'Yes.'

I tried it and actually lost the 2 lbs gained plus a little more so I looked up a recommended Creon diet (of which there are many) and started it but I stayed @ 122.4-.6 since.

I am wondering if when my Dr prescribed the Creon he didn't mention any 'special diet' b/c he actually meant for me to NOT change eating habits to determine if the Creon would work with my 'normal' everyday diet? I saw his PR last week (who actually ran the whole program to find my problem last summer actually) and she was also a little vague and gave me a 'diet' sheet that was again different from any other I encountered in searching the web.

I must admit I had no appetite for many months prior to the fecal test results and I know that @ 80 yo I had to have lost a whole lot of muscle in the past 2 years, so I watch whether stools float or not and it seems that some style of eating (a lot of chicken turkey & pasta tho I don't know 'how much is too much' @ each sitting) has aided this noticeably and I do take fruit and veg (usually canned but not always) with each small normal 3 meals and some apple sauce with the Creon for the 4th dose B4 bed which they advised, but I am seriously now thinking of going back to eating everything I feel like eating and see if my weight starts to climb up past 142.6.

My situation still nags at me somewhat and I have gotten to a point where I don't really care what happens but decided to just 'experiment' with my 'diet' or ('non-diet'!) and keep a record of occurrences as I have for many years believed that it is sometimes worth letting your OWN BODY be your 'laboratory' and find out what does and doesn't work for YOU.

PLUS – many of these 'diets' themselves are quite different from each other to begin with 🙁 🙁

Blessings to all regardless …

Nick