Confused About Diagnosing This...

[elye]

There's still something I'm confused about. I convinced my parents to get tested for celiac, and my dad has just gone for the blood work. I'm still unsure why the blood tests can produce a false negative. I told him that he may have gluten intolerance even tho the antibodies are not showing up in his blood...is this correct? If not, why can a negative blood result (when you are eating gluten) sometimes be wrong? And regarding the biopsy, I assume that a negative biopsy MUST mean no celiac disease. If there is no lower intestine damage, the disease isn't present, right? Isn't that what celiac disease is? I realized how unsure I still am about all this when I was telling my dad what the results can mean, and kept questioning myself before he had a chance to!

[Guest nini]

I understand your confusion. Even the experts can't seem to agree on this. The reason for false negatives on blood tests can be because of Dr.s not running the complete panel or Labs not proficient in interpreting the results and Dr.s not willing to dx based on a "borderline" reading. The reason the biopsy was considered the gold standard is that that is the textbook definition of Celiac, blunted villi or complete villous atrophy. However, and this is where it gets confusing, The biopsy can be falsley negative because it is ONLY looking for the final stages of the illness. It doesn't look for early stages of Celiac before major damage is done. Also damage can be sporadic and missed. It is recommended for a more accurate biopsy that at least 6-8 samples must be taken and not at random. They MUST use an endoscope (with a camera) so that they can look for irritated areas. (Yes the villi damage is microscopic but inflammation is not microscopic and therefore visible)...

In my personal humble opinion The gluten free diet and how your body responds to it, is THE most valid diagnostic tool. The blood tests and the biopsies can only confirm it if positive. They can never be completely negative.

[elye]

Aaahhhh....thank you, Nini, this clears up a lot of my confusion. Simply put, the medical community doesn't quite know what's going on. Surprise, surprise. I've heard (or read) you say before that the only true diagnostic tool for celiac disease is the gluten-free diet. But what if you are asymptomatic, like me? Can't diagnose it with the diet, and the blood tests and even the biopsy, if not done thoroughly, can be inaccurate. Gee, I may never truly know if I've got this !#@!*@!* disease!

[Guest nini]

Aaahhhh....thank you, Nini, this clears up a lot of my confusion. Simply put, the medical community doesn't quite know what's going on. Surprise, surprise. I've heard (or read) you say before that the only true diagnostic tool for celiac disease is the gluten-free diet. But what if you are asymptomatic, like me? Can't diagnose it with the diet, and the blood tests and even the biopsy, if not done thoroughly, can be inaccurate. Gee, I may never truly know if I've got this !#@!*@!* disease!

you may discover that you have symptoms that you didn't realize were part of it. A lot of people do... It's interesting really. In the absence of any symptoms, you kinda just have to go with your intuition or your "gut" so to speak!

The blood tests can be useful to confirm only IF they are positive. If they are positive, then you have it, no if's and's or but's... It's only when the tests are negative that it gets really confusing.

[elye]

Gotcha.