Negative Biopsy

[Helena]

I'm sure I do have celiac. I had positive antigliadin + tTG blood tests when I was on an almost gluten free diet (I'm allergic to wheat) I didn't go through with the biopsy at the time.

But I had a biopsy done recently ... my original reason for asking for the celiac test was to see if my villi had healed because I was having a scope done anyhow for something else. But the doctor wanted me to go back on gluten so he could do a proper test. I didn't eat very much gluten...just a bowl of oatmeal a day for a month (not enough for the test, I know, but oatmeal causes me mild stomach upset.)

Anyhow, the results were negative. He said to avoid gluten if I feel better on a gluten free diet but the negative test results mean that I don't need to be strict about it. At that point, I should have asked him what he meant by "not strict" but I didn't. I'm certainly not going to *eat* gluten....but I wonder if he means that I don't need to be as strict about the possibility of cross contamination?? Has anyone ever heard of this advice before? From everything I've read and heard, celiac disease necessitates a very strict diet.

[ShayFL]

If you do in fact have Celiac, which most believe if you have pos. blood you do, then CC is a problem. You must try to avoid it. If you stay unwell, you can suspect CC. Even if you get better, you want to do your best to avoid CC because damage can be "silent".

[home-based-mom]

I think the negative results mean that you have healed up since you went gluten free, not that you do not need to strictly follow a gluten-free diet. Once you have healed up, a bowl of oatmeal a day for a month is not enough to re-destroy your villi.

I hope your doctor gets his hands on some more information on this topic. It sounds like he doesn't quite "get it."

[Lisa]

Yes, a classic example of a seriously ill informed doctor...grrrrrr.

Welcome to the club! Wrap your arms around a totally gluten free diet and feel better.

[ravenwoodglass]

Does your doctor know that the only gluten item you were consuming during the challenge was oatmeal? If he did that might change his opinion somewhat. You do need to be strict on the diet, unless you want to be giving this GI a lot of money and be taking lots of his symptom relieving scripts in the future.

[Helena]

That's what I thought . . . i.e. that I should avoid cc.

Does your doctor know that the only gluten item you were consuming during the challenge was oatmeal? If he did that might change his opinion somewhat.

Yes, he does know that. And he did told me that the issue of whether oats in and of themselves cause a reaction is controversial but that oats are generally cross contaminated with wheat.

I recall him mentioning in another appointment that he usually finds evidence of celiac disease when doing a repeat biopsy on celiac patients who (like me) were diagnosed in adulthood. So I wonder if that is where he is coming from.

[ravenwoodglass]

That's what I thought . . . i.e. that I should avoid cc.

Yes, he does know that. And he did told me that the issue of whether oats in and of themselves cause a reaction is controversial but that oats are generally cross contaminated with wheat.

I recall him mentioning in another appointment that he usually finds evidence of celiac disease when doing a repeat biopsy on celiac patients who (like me) were diagnosed in adulthood. So I wonder if that is where he is coming from.

I would say that is a good possibility. You should be as strict as you can. Celiac is like pregnancy there is no such thing as being 'a little bit' celiac (or gluten intolerant).