CP and Autoimmune Disease

[TiffanysPancreas]

Hello, I had some on and off abdominal pain months ago and now it is constant and pretty bad. I had a physical and my Dr checked my Lipase level which was slightly elevated. I ended up being admitted to the hospital for 4 days to have a number of scans done... CT, MRCP, Ultrasound, EGD, and a lot of labs. Everything appeared ok other than a fatty liver. I was discharged and told to follow up with my GI for an EUS. I had the EUS 2 weeks ago and the GI told me that I have gastritis and my pancreas has scar tissue that would only make sense for a heavy smoker or drinker (I am neither). I was put on creon and sent for more labs to check for autoimmune issues and also told to schedule a colonoscopy. Has this same situation happened to anyone else? What type of auto immune issues would cause scar tissue to my pancreas? Would love to hear any similar stories or advice. Thank you

[Susaberry]

Do you have any other autoimmune issues such as thyroid disease, etc.? Having one autoimmune disease makes people susceptible to other autoimmune issues. Did your GI tell you how severe the scarring is? Did you ever experience pain like pancreatitis before this episode? Did the EUS show any defects in your pancreas? I have a congenital defect called pancreas divisum. It would have been detected during the EUS. It could be idiopathic CP. Did your GI explain to you the importance of eating a very low fat diet? My experience is similar to yours. In 2012, I experienced pain so severe I couldn’t even drink water. I went to the ER three times within a week. All they did was give me iv fluids, dilaudid, ran labs, and did a cat scan. Everything was normal the first two times. The third time, the CT showed pancreas divisum so they admitted me. I had an mri and endoscopy which revealed gastritis. I still could not tolerate water, but they sent me home. More horrific things happened, but I won’t go into it here. For the next two years, I kept telling my pcp something was wrong. I still had pain. She said it was fatty liver disease. Finally, I made an appointment with a GI in 2014, who sent me for an EUS. The EUS revealed CP. Had the GI I’d seen in the hospital two years previously ordered the EUS, I would have been diagnosed then avoiding two additional years of no treatment. I’ve learned that most doctors don’t understand this disease. You have to advocate for yourself. Ask questions. The most important thing you can do is follow a low fat diet. I stay under 30 grams per day. There seems to be a trend that one should eat 100 grams per day while taking creon. For me, no way!! Staying with the very low fat diet has helped. My last EUS showed no progress of CP. That said, everyone is different. There is a Facebook page Beating Pancreatitis Support. I would join. I wish you the very best.

[behj in reply to Susaberry]

Unbelievable treatment from today’s medical system. I wish you the very best and hope you have recovery.BH

[TiffanysPancreas in reply to Susaberry]

I have had joint pain and sometimes a positive ANA for 25 years but two different rheumatologist have told me it was a vitamin D deficiency. I had some pain this summer but it went away and I thought it was from something I ate. The GI did not tell me how severe the scarring is. I have a follow up appointment with him on 1/30/24. I just received lab results that I had done last week and my ANA was negative but IgG were all worse than they were 1 month ago. My doctor told me to follow a low fat diet and I have been doing that for 1 month & don't notice any difference.

[Jackie1947]

I feel for you. a CT scan in March showed CP . Took 9 months of tests. I can't have enzymes as I'm allergic to Pork products so no treatment. I also have a long standing auto immune disease it's Rheumatoid arthritis. This kind of disease attacks not only joints but organs. I was tested recently to see if the Pancreatitis was caused by another AID but it wasn't I had a colonoscopy recently to see if I have Microscopic Colitis associated with RA. I am neither a drinker or smoker and was a smoker a long time ago. As for alcohol very rarely and I've even stopped that. Good luck.

[TiffanysPancreas]

SO... since my IgG levels were all elevated from previous month my GI thinks I have autoimmune pancreatitis and put me on prednisone. has this happened to anyone else?

[Jesus5]

Yeah. Prednisone for inflammation of pancreas. It is possible. You have to be aware that corticosteroids are not good for pancreas, but your dr. maybe choose it Because it s gonna manage your inflammation and pain in same time. Corticosteroids can ruin your immunity too, so try natural remedies for immunity like moringa, turmeric, black seed oil... Wish you the very best.