Inconclusive Endoscopy

[FVRN]

Hi,

My 12 yr old son is being worked up for celiac due to extreme delayed growth. His tTGA was quite elevated at 15. The GI doctor said it was likely celiac disease and ordered an endoscopy. The niurse called yesterday to tell me that the endoscopy results are inconclusive and that they are "puzzled". She said the biopsy looked more like an allergic response. Im not sure what to make of this, I thought it would either be positive or negative. Has anyone else heard of this?

[mftnchn]

There are a lot of variables with getting a good biopsy diagnosis. The damage can be patchy, so they may not have taken enough samples or sampled the right place. The thing is, with his symptoms and a positive ttg, the diagnosis is almost certain even if the biopsy isn't clear. A dietary response will confirm.

Celiac diagnosis is just not that cut and dried for many paople. But I think it is most likely the case for your son.

You can look online for pictures of endoscopies that show changes seen in celiac and see what the terms are, etc. I'd ask how many samples were taken for the biopsy. If only one, then it was a poorly done biospy.

[Lisa]

I would request a copy of the pathology report from the biopsy samples. You can post them here for interpretation.

As mentioned earlier, the current available testing is not as accurate as we would like. An endo/biopsy exam can rule Celiac in, but it cannot rule it out either.

[nora-n]

If you google capsule endoscopy you find that they see taht there are alays some with different locations of the damage, a few people have the damage lower down in the intestinal tract, and patchy damage is quite common.

I read a posting by a person who paid for her a capsule endoscopy privately and it showed definite celiac.

Often you get a diagnosis by getting a second opinion on the slides.

If you go to www.thefooddoc.com he says that the criteriae for increased leucocytes in celiac have been changed recently. I think I remember that more than three is abnormal per villi, or something like that.

What was the range of the ttg-IgA test? I have seen ranges where 3 is top of the range, and others where other numbers were used.

The reason is that just above range is not so cclusive, but well above range means one is definitely celiac.

nora

[FVRN]

If you google capsule endoscopy you find that they see taht there are alays some with different locations of the damage, a few people have the damage lower down in the intestinal tract, and patchy damage is quite common.

I read a posting by a person who paid for her a capsule endoscopy privately and it showed definite celiac.

Often you get a diagnosis by getting a second opinion on the slides.

If you go to www.thefooddoc.com he says that the criteriae for increased leucocytes in celiac have been changed recently. I think I remember that more than three is abnormal per villi, or something like that.

What was the range of the ttg-IgA test? I have seen ranges where 3 is top of the range, and others where other numbers were used.

The reason is that just above range is not so cclusive, but well above range means one is definitely celiac.

nora

[FVRN]

If you google capsule endoscopy you find that they see taht there are alays some with different locations of the damage, a few people have the damage lower down in the intestinal tract, and patchy damage is quite common.

I read a posting by a person who paid for her a capsule endoscopy privately and it showed definite celiac.

Often you get a diagnosis by getting a second opinion on the slides.

If you go to www.thefooddoc.com he says that the criteriae for increased leucocytes in celiac have been changed recently. I think I remember that more than three is abnormal per villi, or something like that.

What was the range of the ttg-IgA test? I have seen ranges where 3 is top of the range, and others where other numbers were used.

The reason is that just above range is not so cclusive, but well above range means one is definitely celiac.

nora

[Fiddle-Faddle]

Given the elevated tTg and the fact that there is SOMETHING not normal with the biopsy, I would come to the conclusion that he has gluten-induced damage (also known as enteropathy)--which is the definition of celiac.

If he was NOT eating a lot of gluten (the equivalent of four slices of bread per day for 3-4 months prior to the biopsy), then whatever damage he had was probably healing.