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Hi all,
Forgive me if this will be long, but I need to vent and get opinions. I
finally saw the gastroenterologist yesterday after being gf for 5 months. Of
course he wasn't happy about it. He had me tested for anti-endomesial
antibodies, because he said they are more sensitive now, and if I really have
celiac disease there should still be some antibodies circulating. If it is
negative, he wants me to do a 3-4 week gluten challenge, but says if I am
sick after a week I can stop and repeat the blood test, and have the biopsy.
He agreed that there was a chance of refractory celiac after a challenge, but
said he had spoken with Dr. Kelly at Beth Israel Hospital in Boston
(supposedly a well-known GI Doctor) and this was how Dr. Kelly told him to
proceed.

He said that my mildly positive rheumatoid factor didn't necessarily mean
anything, because women my age (53) often have circulating antibodies and not
necessarily any disease symptoms. He said my hypothyroidism didn't
necessarily mean anything, because so many women have it. He also tested my
ferritin, iron and iron-binding capacity, despite the fact that I am not
anemic on CBC. I basically felt that he knew of what he was speaking, but I
am anxious that the blood test will be negative, and that I won't be
diagnosed, and that I will become ill again. My so-called IBS has been
totally, 100% gone since going gf, except for 3 days when I was taking Vit. B
which turned out to have gluten. I guess I am a little perplexed at how blase
he was about celiac disease- he just said it is rare and my diagnosis right
now is "diarrhea". Any words of support would be welcome. It will take about
a week to get the result of the blood test. Thanks, Karen D'Andrea