False Postitive Ttg? Also Has Type 1 Diabetes.

[kaiess]

I am so frustrated with the testing each year and the "false positives" they keep saying he has. My son is 10 and 2 years ago had a TTg run b/c he has Type 1 Diabetes and they like to screen all the kids. He had a scope done a few months after his TTg (it was in the 90's when normal was under 20). His biopsy was negative but they did find ulcers (non-H-pylori....they gave no explanation as to what may have caused the ulcers at all). Retested TTg 6 months after the scope and TTg is now around 150. They waited, then retested 6 months later. This time the TTg was +>222.9 or thereabouts......basically off the chart. They scoped 4 months later again and found redness and inflammation but the biopsies were negative. No diagnosis. No explanation as to WHAT would be causing the redness and inflammation either. I'm so frustrated with them (peditric GI specialist...only ones in the province). I asked "WHAT NOW" they said, retest in a year and see from there if he has symptoms then they'll rescope, if not, basically wait for symptoms regardless of the TTg results. I have just had his TTg done again and am waiting for the results. Can there be such a thing as a false positive TTg???? If not, WHY do they wait for destruction before they'll diagnose? I know we can go ahead without the official diagnosis but my husband is very leary of making our son live gluten-free if he "doesn't" have it.

[ravenwoodglass]

Can there be such a thing as a false positive TTg???? If not, WHY do they wait for destruction before they'll diagnose? I know we can go ahead without the official diagnosis but my husband is very leary of making our son live gluten-free if he "doesn't" have it.

I think you are smarter than the doctors with this one. The reason why they are waiting is they think along the same lines as your husband. They are waiting until enough damage has been done to his intestines to produce a positive biopsy. Unfortunately a lot of damage can be done to other body systems while they wait. HIs TtG is is positive and becoming more and more positive with each test. That would be enough for some doctors to diagnose him. Unfortunately the fact that celiac is much more than just a gut disorder isn't well known amoung many doctors. In some places they wouldn't have even biopsied your son they would have diagnosed with the elevating blood work. I would get your son on the diet. One good effect of that will be that his BS should be easier to control on the diet.

[nora-n]

Yes, they screen all type 1 diabetics for celiacs because they are much more prone to celiac than non-diabetic kids.

But have they considered thinking the ohter way around, that maybe the gluten triggered the diabetes in teh first place???

We have heard from other peopel on forums that when they had a video capsule endoscopy, the celiac was clearly visible, and some had the damage at the wrong end of the small intestine.

The scope only reaches the very first bit of the small intestine.

They easily miss the celiac lesions with the normal biopsies.

There is also this inflammation bit, they need to count how many intraepitelial lympthocytes on each villi. If they are more than 5 then it is clearly celiac. Did they do that?

Dr. Lewey writes about that in his blog. www.thefooddoc.com