Early Learnings and Advice for New Celiac Patients

[Nat1 4]

I am totally confused and would appreciate some help before I see my doc in a few weeks.

I had been following a gluten-free diet (well sort of) on my own for a while because I self-diagnosed myself with gluten intolerance. Several months ago I started having pains in my stomach, on and off. So I had an endoscopy done on the stomach only. The biopsy made them suspect celiac and I had the blood test done which was negative...

When I just talked to the nurse, I told her I wanted an endoscopy done in my small intestines to which she replied they didn't do it. You can only have a colonoscopy or endoscopy of the stomach, not the intenstines. This is where I got confused and asked her how they figured out if the villi in the small intestine was flat or damaged...Now she was confused and didn't make any sense. We both decided it would be better for me to talk to the doctor.

I want to have a clear understanding of this before I see him. So, how exactly does this work? Everybody is talking about endoscopy showing the condition of the villi, so I would think the stomach endoscopy wouldn't do it. What am I missing here? Do they actually do an upper endoscopy for the small intestines?

Thanks for your help!

[psawyer 697]

Yes, the villi that get examined and from which the biopsy to diagnose celiac disease are in the small intestine. The endoscopy can only see the first part of the intestine, which is over 20 feet long. Celiac disease cannot be determined from a colonoscopy, nor by a biopsy of the stomach lining.

My endoscopy in 2000 showed serious damage to the villi. A repeat in 2005 showed normal villi. I had completely healed on a strict gluten-free diet. If you have been gluten-free, or close to it, there may not be enough damage to be detected.