Doubting Dr. Thomas

[L.A.]

My gastro guy is having issues commiting 100% to me having celiac disease . A specialist did the blood test which came back positive for Celiacs. My gastro guy decided to do a biopsy and it was negative. Is the blood test proof positive?

[mouse]

Yes, it is. You can never have a false positive, but you can have a false negative. Many doctors still think of the biopsy as the gold standard. The problem with it, is if he does not take enough biopsies from the right areas, then the test can be negative. I only had the blood test and never the biopsy. But, I had also become the "classic celiac" before the diagnosis. So, my doctor did not think it was necessary for me to have it done.

[Phila]

My doc diagnosed me based on symptoms alone, but then again I had a tonne of symptoms. He's a huge proponent of looking at dietary response to come to a diagnosis. I must say that I do regret not having all of the tests, although I am absolutely convinced I have celiac disease.

Today was actually a scary day for me. My prolactin levels are high again so doc has ordered a CT scan to check for a pituitary tumour. I'd been having a tonne of issues lately which I thought were biliary related, but my doc seems to have dismissed that. He's worried about the prolactin and kept staring at those numbers.

[Guest nini]

a pos. blood test is absolutely proof positive... just because the biopsy didn't find anything, it doesn't mean diddly squat... you have Celiac... welcome to the club! Get on with the business of getting well.

I was dx'ed on positive blood work and positive dietary response alone, I did not have a biopsy at all... my Dr. had said that since my blood work was positive I absolutely have it and did not need to go through a biopsy to confirm it.

[Guest Robbin]

My doc diagnosed me based on symptoms alone, but then again I had a tonne of symptoms. He's a huge proponent of looking at dietary response to come to a diagnosis. I must say that I do regret not having all of the tests, although I am absolutely convinced I have celiac disease.

Today was actually a scary day for me. My prolactin levels are high again so doc has ordered a CT scan to check for a pituitary tumour. I'd been having a tonne of issues lately which I thought were biliary related, but my doc seems to have dismissed that. He's worried about the prolactin and kept staring at those numbers.

I am sorry you have been having these problems. I haven't seen you post before, so welcome.

Also, ditto for me--the positive bloodwork means just that--positive. Why the medical community does this "song and dance act" around diagnosing this disease, is beyond me.

[jayhawkmom]

I'm very new here, and still wondering around just reading, reading, and reading. I came across this and wanted to ask, where do you think my daughter fits in here?

For reference purposes - the lab we used gave us the following information as THEIR norms. I realize other labs have other standards.

Ttg - <5 (my daughter's was 4)

IgA - <10 (hers was 9)

IgG - <11 (hers was 72)

EMA - Negative (no number provided)

Total IgE <20 - (hers was over 100 - 170 if I correctly recall)

Positive SPT - wheat/egg

Positive RAST - wheat/egg

(She has other allergies as well)

Negative biopsy for Villi damage, however... she has duadenal ulcers that I'm told are consistant with Celiac.

So, is she.... or isn't she?

She wasn't diagnosed Celiac. She was diagnosed with a Gluten Intolerance. What's the difference? Nothing, as far as the diet is concerned, right??

Thanks!

[aikiducky]

You're right, gluten intolerance means exactly the same diet-wise as celiac, and you need to exactly as careful about cross-contamination, too.

"Celiac" is a name that the doc gives to a disease when all the symptoms and test results are present that the medical community has agreed on have to be there. So when the test results and symptoms aren't exactly according to that list, but it's obvious that gluten is a problem, they call it "gluten intolerance" instead to be completely PC. You need to realize that the definition of "celiac" keeps changing, so in the future, someone with the exact same picture as your daughter may well get diagnosed celiac. They keep changing the definition as more information comes available with reseach, but that of course happens slowly.

Pauliina