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PostPosted: Mon Nov 06, 2006 10:23 pm 
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Joined: Mon Feb 27, 2006 12:37 pm
Posts: 96
I wasn't able to eat gluten before my biopsy because I am allergic to wheat and oats. I tested positive on a rast for most grains. They never even told me my blood tests were positive for celiacs, or that they were testing for it in the biopsy. I just read it in the report of operation that I requested from them. I'm wondering if I should maybe see a new gastro doc.

_________________
2 year old son: allergic to milk--waiting to introduce other allergens

self: allergic to milk, eggs, soy and other legumes, corn, oats, wheat, turkey, tree nuts, yeast, fish


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PostPosted: Wed Nov 08, 2006 11:07 am 
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Joined: Tue Mar 22, 2005 6:53 pm
Posts: 1454
Location: Canada
Quote:
I wasn't able to eat gluten before my biopsy because I am allergic to wheat and oats. I tested positive on a rast for most grains.


The biopsy would have told them nothing then--other than the fact that there is no villous atrophy (detectable damage to the villi) when you are on the gluten free diet.
Even when on a gluteny diet, the doctor needs to take multiple samples from the small intestine---sometimes the damage is patchy.

Seriously, all tests for celiac disease----the blood tests, the biopsy--should be done while the patient is on a gluten-filled diet. (My GI doc did the blood tests when I was all but gluten free, but he told me in advance that the results wouldn't be accurate. Although I didn't go through with the biopsy, he repeated the blood test after I had been on gluten for a period of time.)

It is tricky for docs to diagnose celiac disease once their patients have gone gluten free---while they may prescribe gluten for a time, there are no medical studies to indicate how much gluten is enough or for how long. (I wonder too whether it is a good idea to damage a major organ *on purpose*. . . especially because it can take a long time to heal, and some people never do heal.)

Quote:
They never even told me my blood tests were positive for celiacs, or that they were testing for it in the biopsy. I just read it in the report of operation that I requested from them. I'm wondering if I should maybe see a new gastro doc.


Were your blood tests positive? They are pretty accurate (although false negatives are expected when on a gluten free or nearly gluten free diet). The EMA test is close to 100% specific for celiac disease.

Is that even legal? I wonder if they are allowed to check for things and not tell you? Don't we need to be informed about medical procedures?

It isn't uncommon for doctors to have a very sketchy understanding of celiac disease and the relevant diagnostic procedures. While I can entirely understand not remembering what one was taught in medical school and/or not keeping up with the recent research seeing as there is *so* much to know, I *can't* understand why doctors wouldn't just look this stuff up. It isn't like it is hard to find what the clinical guidelines are for diagnosing any given disease! Okay, rant over.


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