Pancreatic insufficiency- normal pancreas! Now what?

[Tharrell]

Hi y'all. I'm stumped again! Today I had an endoscopic ultrasound to find out why I have pancreatic insufficiency. The doctor found a completely healthy pancreas, nothing is wrong with it! So why then the insufficiency? I had one positive stool test for it and two positive stool tests showing malabsorbtion. I'm also showing folic acid and B6 defficiency. Never mind that no matter how much I eat I can't gain much needed weight which of course can be the m.kansasii lung infection which my gi does not think so. I am still showing striation of recent bleeding and inflammation in my stomach. I also no longer tolerate fats or chicken skin which causes almost immidiate vomiting. I don't drink any alcohol! My rheumy mentioned that sjogren's can affect the pancreas causing fluids to thicken and turn into sludge, but would they not have seen this on the ultrasound? Of course this is the same rheumy that told me none of my gi problems are part of MCTD or sjogren's. That the only common denominator is that it's in my body.
Any ideas would be appreciated since I can't find anything on the internet about pancreatic insufficiency with a healthy pancreas!

[irish]

I know that you had the exam and the pancreas was found to be normal, but I am wondering if the cells that secrete the enzymes/chemicals/mucus whatever it looks like, are just not producing and secreting up to par because of inflammation from the Sjogrens.

Have they tried giving you any of the supplements to promote better digestion?? Also, have they checked your vit b12 levels.? If you are low on B6 and folic acid I would think that they would supplement this also. The folic acid and B vitamins are very important in the digestive process and absorption of the nutrients.

I have been having problems with my colon and abdominal pain/cramping for a couple of years. Some really weird issues and everything is normal on scoping. My doctor did the blood work for the folic acid and B vitamins and everything was within normal range. My doc emailed me and told me to start taking 1000 mcg of Vit B12 a day anyway to see what happened. Well, my colon is not doing as many strange things and the pain is very much less. Autoimmune stuff is so confusing. Maybe address taking supplements with your doc to see what happens. Just my thoughts. Good luck. Irish

[Tharrell]

Hey Irish! They checked all my viramin levels and the b12 was in the high normal. I have been supplementing b6 and b2 for three years since I was already below normal three years ago. The folic acid deficiency is new to me and I supplement with that now. Less mouth ulcers! I'm on Creon which is a pancreatic enzyme replacement therapy, but have not seen much of a difference yet. The gi doctor also has me taking FDguard which is a medical food to help with all the stomach issues. I'm also taking probiotics, because of the long term antibiotic treatment. Incidentally I had to stop the treatment, because my liver numbers went way above normal in the 200's. Pulmunologist said as soon as they go back to normal I need to restart the treatment with different antibiotics. I have a lot of organ involvement with the mctd. My rheumy only looks at the sjogren's and forgets about the scleroderma/lupus overlap of which I have symptoms as well. That woman confuses me! Maybe the Orencia injections will help with that when I get to start it after my hip surgery. I don't know much about it.

[Helene]

I don't have pancreatic problems, but I had intestinal problems. My rheumy suggested Pancreatin and it helped a lot. I'm not really lactose intolerant anymore. I get it at Amazon. It's cheap. You might want to try it.

[irish]

I wonder if the drug N-Acetylcysteine would help at all. This drug can be bought in health stores, but it is wise to talk with doctors and get a script for it so at least you know what the drug should do, what the side effects are and how many time a day to take it.

This drug is given to patients with cystic fibrosis and chronic obstructive pulmonary disease. It helps to thin the secretions in our pancreas and lungs so that they function better. I realize you have done everything there is to do, but the NAC just might help. My son has a friend with cystic fibrosis and he has been on this drug along with some of the others you mention (creon I believe). Good luck. Irish

[Tharrell]

Thanks Helen and Irish for your suggestions! I'll ask my doctor about those products!