coeliac testing: positive bloods, negative endoscopy?

HI there,
My daughter (4yo) has had a positive blood test for coeliac in October 2012 (unsure which blood test but it was 120?) and this week on Tuesday had an endoscopy. The consultant said there was no visual evidence, ie the villi looked normal, so we are waiting on the results of the biopsy. She has remained on a gluten containing diet since the blood test.

Has anyone else experienced this? He was unconcerned that nothing was visually different, as he said they only see something in about half to two-thirds of endoscopies. I guess I am just getting impatient with waiting as I would just like to know! If the biopsy is negative, what happens then?

[NT77]

If the biopsy is negative, then she just won't be officially diagnosed as celiac. Diagnosed or not, blood test indicates that her immune system most likely sees the gluten as an enemy and attacks it vigorously. Years of this process may eventually lead to the destructon of villi, and only then is a person officially diagnosed.

Celiac is not a disease. It seems that we humans (at least not all of us) have still not fully adapted to gluten becuse we're not eating it for very long. Simple as that.

[kevieb]

I have 3 children with celiac disease and two of them had biopsies--one of them showed no damage and the other showed only one area that could possibly indicate damage.  
When i had all of them tested with the Ttg Iga test they werre all positive for celiac.

I asked our ped Gi why they didn't have any damage, and he told me that the small intestine is about 22 feet long and he can only get in about 6 feet with the scope---so that leaves a lot of intestine that they cannot biopsy.  He told me that with their numbers he was sure they had damage---and their numbers were way lower than you daughter's numbers.

  Also, celiac damage can be patchy---so if the biopsies they take happen to miss the celiac damage, the biopsy will look normal.

Intestinal damage is not usually obvious to the naked eye--our ped GI let me stay in and watch one of my daughters' biopsies, I stood right right next to him and held on to her hands to keep them away from her face and watched the whole process--very interesting.

Our family also participated in a celiac study done through the University of California, Irvine.  To qualify for the study, you had to have at least 2 family members with celiac that hd been diagnosed EITHER by biopsy or by Ttg testing---they would not accept anyone who had been tested by enterolab.

If her blood test is the right blood test, she will most likely be officially diagnosed as celiac--even if her biopsies are negative--plus, if you keep her totally gluten free and test her every 6 months, her blood levels should fall to normal---and that will take away all doubt of whether or not the blood test was right.

We used to test our girls every 6 months in the early years to see how well they were following the diet.

[Javah]

Thanks for your feedback.

Her biopsy came back positive for intestinal damage so yes, coeliac disease. A relief (which might sound strange) to be officially diagnosed. For us it means a lot more support than if she hadn't been.

We are two months into a GF diet and so far so good, although she got "glutened" at the weekend at a birthday party - I am trying to figure out what it was but anyway, it was pretty obvious she had eaten something she shouldn't have. I guess from time to time despite my best efforts it may happen. Fingers crossed not on my watch again!!