Your Expert Opinion Please

[SAVANNAH21]

First let me say that I have dealing with my smptoms for years, since my gallbladder removal 3 1/2 years ago. My family doctor at times has made me feel stupid and that all my symptoms were in my head. I have gone through a lot of different testing and just when I thought I had found the reason of my symptoms I have been let down with no resolution. I kept telling myself, that was it, I'll just live with this. But I start feeling miserable and I would say this is NOT in my head something is wrong here. I have felt for a long time that it had to be associated with eating. My diet was limited the last few months because I started to realize what foods were making me feel like crap, bread, pasta. I actually thought I had an ulcer because every time I ate pasta I was in pain so I eliminated all these from my diet the last couple of months. Finally after 3 1/2 years my family doc sends me to a general surgeon for an endoscopy one week and then a colonoscopy two weeks later. The endo showed that I had broadening and marked flattening of the villi in one area. Pathologist states that if on a clinical basis, patient has Celiac disease, the microscopic finding are compatible with celiac disease. My family doc calls me and says you have Celiac and wanted to do lab work. I went for the blood work the next day and found this wonderful website. I then began eliminating gluten from my diet....I felt wonderful!!! 11 days later my family doc calls and said the blood work was normal and it is just gastritis and no I did not have Celiac reck with him in 8 weeks. I was dumbfounded. Everything I have read says if your biopsy says celiac you have it. I could have cried.....let down once again! I called my family doc back and spoke with the receptionist and told her that I was concerned my blood work was false negative due to me removing a lot of fiber and starch from my diet the last couple of months, would she please have the doc call me....to date no call back yet. I wasn't about to back down on this, I believe this is what I have. I then had my colonoscopy. The surgeon called me with my results and said I had microscopic colitis. (Again I have read this is associated with Celiac). I asked him about the positive biopsy and negative blood work. He said there is a lot of false negatives with the blood work and he said the biopsy did show blunting on the villi. He suggested a second opinion with a GI doctor which I have scheduled for next Tues. I know a lot of you are experts on this..........DO I HAVE CELIACS IN YOUR OPINION????? I am so afraid that this doc on Tues will agree with my family doctor and not the surgeon......I would appreciate any support I can get.

[Greenling]

I'm new to Celiac (diagnosed three weeks ago), so I think you'll get more experienced opinions, but I thought I'd share what my doctor told me (I was diagnosed at the Mayo Clinic, so I trust him!). He said the endoscopy was the "gold standard" for diagnosis. Since Celiac is genetic, he suggested that my siblings should have an endoscopy even if their bloodwork turned out negative so that they had a conclusive diagnosis (as false negatives on bloodwork are possible). Since then I've read a lot (published research as I'm nerdy that way), I've not seen a single reference to a "false positive biopsy". So I would definitely follow up with the GI. Good luck!

[sa1937]

I'd say you have it. Gastritis, which is inflammation, also showed up when I had my endo/biopsy so I don't think it's all that uncommon. False negatives on either the blood test or biopsy are not that uncommon.

You don't need a doctor's permission to go gluten-free. Based on your positive response when you eliminated gluten from your diet is enough for me.