Frustrated Over Biopsy

[jemms]

I finally got my results back...Doctor says that biopsy came back negative but he still thinks I have Celiacs based on my bloodwork. I never stopped eating gluten for the test. Now that I am off gluten I feel so much better. Still have some fatigue but my stomach issues have subsided. I dont eat any gluten, casein or dairy products and feel A LOT better because of it. I am frustrated because I wanted a definitive answer. I have read that this happens often to people.

Also, one thing I realized on my bloodwork for food intolerances is that barley came up as NOT being reactive. This doesnt make sense to me since barley is on the list of what NOT to eat. I'm confused.

[shadowicewolf]

  On 6/2/2011 at 2:35 PM, jemms said:

I finally got my results back...Doctor says that biopsy came back negative but he still thinks I have Celiacs based on my bloodwork. I never stopped eating gluten for the test. Now that I am off gluten I feel so much better. Still have some fatigue but my stomach issues have subsided. I dont eat any gluten, casein or dairy products and feel A LOT better because of it. I am frustrated because I wanted a definitive answer. I have read that this happens often to people.

Also, one thing I realized on my bloodwork for food intolerances is that barley came up as NOT being reactive. This doesnt make sense to me since barley is on the list of what NOT to eat. I'm confused.

I know the feeling. My biopsy came back negative but my blood work was positive. My doctor doesn't think i have it but he also doesn't know why i would get a positive blood test i intend to go on to the next phase of testing, the one where it looks at the genetic risk (?). But unlike you i was gluten free for 4 weeks inbetween (due to orders from another doctor).

So ya, one doc says yes other says no, and i'm frustrated as all hell.

As for food intolerences, i don't think barely would show up unless you had been eating it (?) I'm slightly confused as well

[Skylark]

Developing celiac is a process. First you make antibodies, then your immune system starts doing the damage to your intestine. Damage can be patchy and pathologists often don't consider the earliest stages of celiac diagnostic. You can be anywhere in that process, or your doctor might not have gotten a biopsy from a damaged place.

If you have the antibodies and feel better off gluten, there are a lot of doctors and experts who would say you have celiac disease. It is unfortunate that some doctors feel a need to practice "textbook" medicine, ignoring research and ignoring the obvious. Heck, I never even had testing and my doctor considers me celiac. He says none of the tests are good and someone who has a dramatic response to going off gluten is most likely celiac. I'd say you're lucky to get any solid proof at all!

As far as barley, food intolerance blood tests are notoriously unreliable. You need to be off barley if you have celiac antibodies.

[love2travel]

Last night I attended an interesting lecture by one of Canada's leading authorities on celiac disease (a gastroenterologist). She said that only 39% of all biopsies (in Canada, at least) are done correctly! She said to make sure that at least 8-11 biopsies are taken, not just the usual 3. Interesting stuff.