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Cara in Boston

Question About Gluten Challenge

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I can't believe it is mid-March and I am still posting on the Pre-Diagnosis list. I was certain (and told by MD) that I have it . . .

Anyway, here's my question for today:

I tested very positive on the initial blood test (for IgA and TTG IgA). By the time I got in to see the GI (at an actual Celiac Center) I had already been somewhat "gluten light" and definitely gluten free for 10 days. He ordered a blood test for that day and an endoscopy for two days later. Told me to go home and eat gluten (2 days) until the endoscopy. He felt confident that 10 days would not make a difference.

Well the blood test came back negative (but I haven't actually seen it and don't even know which tests were done) and the endoscopy came back negative.

I am now doing a three month gluten challenge and go back to be re-tested in May.

I know the three month number is sort of arbitrary - no one really knows how long it takes. My question is: Have any of you tested positive after a SHORTER gluten challenge? If all my symptoms are back (4 weeks now) then wouldn't that mean there has to be something that would show up in my blood? (I don't think I'm even going to bother with the 2nd endoscopy if the blood test is positive again. That will be enough for me.)

I am hoping MD will agree to check again at 6 weeks just in case . . . I'd love to not have to wait the entire time to go gluten free for good.

Thanks (again) for any insights you guys can share.

Cara

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Really? No one?

Has anyone had their doctor tell them a shorter time for the gluten challenge? Different books I have read say "several weeks", "a couple of months" and "three month minimum."

I can't imagine my little 10 day trial of being gluten free would take so long to reverse.

Really, I'm just being hopeful that things will happen much quicker and I can get started feeling better soon. I am fantasizing about a summer with my kids where I have the energy to take them on all sorts of adventures and we don't have to worry if there are bathrooms available everywhere we go.

Also, I just very impatient.

Cara

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Only have a slightly relevent story to share . . . One of my daughter's docs wanted her to do a gluten challenge for two months. If symptoms returned prior to the end of the two months then the challenge was over and no blood test required...the return of the symptoms was diagnostic in itself. We did an accidental challenge when she had a product a school that was originally gluten free but the vendor had changed and the new product contained wheat. Her challenge was over in one day. Does your doc know that your symptoms have returned? He may not require you to finish the challenge.

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Only have a slightly relevent story to share . . . One of my daughter's docs wanted her to do a gluten challenge for two months. If symptoms returned prior to the end of the two months then the challenge was over and no blood test required...the return of the symptoms was diagnostic in itself. We did an accidental challenge when she had a product a school that was originally gluten free but the vendor had changed and the new product contained wheat. Her challenge was over in one day. Does your doc know that your symptoms have returned? He may not require you to finish the challenge.

Did your daughter ever have tests done? Just wondering if the doctor made the diagnosis on gluten challenge alone. I'm in a similar situation, went gluten free for a month, but now have reactions when I eat it. But in hindsight, should have waited to go gluten free so I could have been tested.

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Yes, my daughter had a prior positive blood test. The doctor that wanted to challenge her was the doc we went to for a second opinion (because we were in major denial). In addition, we went to him for a while after her original doctor moved away. He wanted to challenge her because he has a different testing/diagnosis protocol than the original doc. I wasn't even sure I wanted to challenge her. At a minimum, I wanted to wait till she was older (she was 6 at the time) so that she could give me better feedback on how she felt. As it turned out, it wasn't my doing anyway and there wasn't any problem with interpreting her response/symptoms from eating wheat.

Additional extenuating circumstances that muddied the waters of her original diagnosis . . . she had the stomach flu a couple of days prior to her endoscopy. Her blood panel was drawn on the same day as her endoscopy . . . the doc really thought she had EE and that was what the endoscopy was for. She had two biopsies of the small intestine taken just because he was in the neighborhood so to speak. He told me afterwards that if he was actually doing biopsies for Celiac, he would have taken a lot more. The biopsies were officially negative for visual damage. However, the biopsies showed a generalized disaccharidase deficiency. That was a test that showed that not only was her lactase enzyme low (lactose intolerant) but all the other enzymes they tested were low as well . . . these were/are the enzymes produced in the tips of the villi. Doc called it a "smoking gun" and basically said we caught it before a lot of damage was done. Also, FWIW . . . I had asked for the lactase test (disaccharidase test). I don't think it is normally done.

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