4 replies to this topic

[steve-o]

Well, I finally saw my doctor today to get the results of my blood panel. I'm sure lots of other people have similar confusing results, so I wanted to share my experience and insight:

I had an IGA Anti-Gliadin antibody reading of 53 (over 25 is high), but my TTG was only 3, which is a low/negative number.

My biopsy was also negative, BUT....he only took one tissue sample, so I don't have a lot of faith in the scientific value of this result, given that damage to the villi can be patchy, and all the literature I've read says that you must take multiple tissue samples to avoid sampling error.

The doctor said this means I don't have celiac disease. He said although the Anti-Gliadin AB is high, this doesn't necessarily mean I have celiac. (I didn't think to ask him at the time...but I'm kind of curious, why do they bother doing this test if the results don't mean anything?)

I asked if this means I have a gluten intolerance, that hasn't gotten so bad that it's damaged the villi yet. His reponse was that you either have it, or you don't....there's no degrees of gluten intolerance.

But then he said my symptoms before going gluten free were classic celiac...and the improvements I've seen since being gluten free for the past month, are exactly what he would expect to see from somebody who was recovering/recently started the gluten-free diet. He said there are "subclinical" cases of celiac, and that I may be one of those cases. His recommendation was to stay gluten free for a few more weeks, and then slowly try reintroducing gluten into my diet. If I have reactions to it again, I can probably take this as "evidence" that I need to avoid gluten.

I guess the point (which most of you already know all too well) is that in the end, you need to just listen to your body. Blood tests and biopsies aren't perfect, and if your body is telling you that it doesn't play well with gluten...you should always listen to what your body tells you, regardless of what the tests/doctors say.

[LaurieAnn13]

When my doctor diagnosed me, it was only with the blood tests. My levels came back indicating celiac, I never had a biopsy. I responded really well to the gluten-free diet and I just went with that, as you said...your body knows best!!

Good luck!
Laurie

[rmmadden]

My experience with celiac disease and going to the Doctor is that I have come to learn what an un-exact science medicine is. I always thought with all the technology etc. that medicine was more specific in its diagnosis and treatments....Wrong. This seems especially true when dealing with celiac disease!

Your best bet is to listen to what your body is telling you because nobody knows you like you do.

Best of Luck!
Cleveland Bob

[celiac3270]

I think your physician is about 1/2 right on this one.

An AGA IgA definitely is not enough for a diagnosis. The Anti-Gliadin tests are not very accurate at all. The tTG is the best serological test out there right now, followed by the EMA. A negative biopsy and a negative tTG would be grounds for saying no celiac. However, one sample is not going to work...the biopsy is worthless with only one sample.

What I would suggest is this: get a gene test. This will tell you if you can or cannot have celiac. If you have neither the HLA-DQ2 or HLA-DQ8, you cannot have celiac, and you can rule out celiac altogether. If you have either of the genes, then you should probably have an EMA and another endoscopy, making sure that they take multiple samples.

The part that I think is 1/2 wrong is that you can't have celiac. There is inadequate testing to rule it out altogether, because the tTG, though important, isn't the only way to diagnose or...not diagnose.