Should I Be Gluten Free?

[candacelynn]

Hello everyone, I will try and make this quick but it's a long story. In January of '09 I was hospitalized for a gallbladder surgery which was supposed to fix the gastro distress I was having. I couldn't even get out of bed except to go to the bathroom. Anyway they did the surgery and things continued to get worse. I was putting out 7 liters of fluid a day. The local doctors thought it was celiac but I tested negative and they had me on a gluten free diet. They sent me to Froedtert Hospital in Milwaukee where they diagnosed me with total villi atrophy. They also told me I had celiac from the slides they viewed from the other hospital from my ugd. However they repeated the ugd to confirm 2 weeks later after being on the gluten free diet with no change. They said it was not celiac that it was Nongranulomatous Chronic Idiopathic Enterocolitis and that there was more damage than there had been before so they took me off the gluten free diet. To make a long story short I've been on prednisone, 6mp, and remicade for the last 1 1/2 years. It's caused more harm than good to the rest of my body but my small intestine has started to heal but I still couldn't get rid of the steroids. So the GI and I decided I should go gluten free again just to see what happens. So I did and I have been able to get down from 60mg of steroids to 7mg and I am still tapering. However I have been retested for celiac in Milwaukee and I only had one of the lower genetic markers. Though some of my family members have celiac. I guess my question is do I stay gluten free for the rest of my life, or is this just a mental thing. The evidence seems there to me. But it's not something I want to do if I don't have to. I don't wish this on anyone. Any advice on whether it sounds like I should be gluten free?

[scarlett77]

My question would be do you FEEL better on a gluten free diet? It may be that with all the rest of the stuff that gluten just may be harsh on your digestive system, not necessarily Celiac. I think at this point gluten may do you more harm than good. Personally, if you feel better gluten-free than do it.

While I agree a gluten free diet is a PITA, I think there are far more worse things. With all the gluten free items out now it's actually not that bad. Good luck and I hope you feel better!