Negative Biopsy

[high maintenance]

I had biopsies done last year and they came out negative, but my bloodwork was positive. I've been on a gluten free diet for 8 months now, and the only difference is that my anemia is gone. The doctor's I saw said it was up to me whether to go gluten free or not. I'm wondering whether in fact I am truly gluten intolerant. Does anyone else know anything about how accurate bloodwork is? I would hate to continue to be on this diet if I really dont need to. Any ideas?

[pmrowley]

The most important question is, do you feel markedly better on the diet? Having your anemia disappear while gluten-free is significant. But otherwise, it sounds like you might have had some other issue. I don't know the accuracy of the blood tests, unfortunately. They didn't have them when I was diagnosed.

-Patrick

[KaitiUSA]

Well there are a # of reasons your biopsy could have come back negative. If you did not have damage there yet or sporadic damage they could have missed it. If you had positive blood work I would go with that. What celiac tests were you tested for?Some are very specific for celiac. I was only diagnosed with blood tests because of the test numbers that came back, I had a gene test that said I had the DQ2 gene and it was pretty obvious and the doctor had no doubt.

The anemia going away should be a sign that the gluten free diet is working because anemia can come with celiac. Have you been feeling better on the diet?

[high maintenance]

There are days when I think I feel better, but some days I feel just the way I did before going gluten-free. I seem to be itchy allot, which may mean I have other allergies going on, but I can't seem to attribute it to any certain food (soy, corn, etc). I am still fatigued and still have not been able to gain too much weight - was underweight before. And I'm not sure if the anemia is gone because of going gluten-free or because I was put on birth control pills to help control my heavy periods and that has helped tremendously - maybe that was why I was anemic? Who knows for sure! I have been very diligent about being gluten-free and at times it is so hard - being the only person in a house of 5 that is gluten-free is no easy task. I am forever washing my hands after touching wheat products I guess I should ask to have that gene test done, that way I can be more certain.

[Lesliean]

I am astounded that your doctor would have positive blood work and say you might eat gluten. That is like having the EKG and heart tests that show blockage and saying that because the patient has not had a heart attack yet they might not have heart disease.

The biopsy can miss the damage or the intestines might not be very damaged-yet. It is a hard diet to get used to and even one crumb will give you all those symptoms you keep having. Flour in medicines, in the jam jar, on the counters, in soup, BBQ sauce, lip stick... It is so easy to eat gluten inadvertently and then think you are having symptoms of something else. I hear problems with dairy and soy a lot too, but always in addition to gluten.

Of course it could be something different for you, but my periods are regular for the first time in 10 years because of the GFD. If you have the gene test please know that they still miss at least 3 % of Celiacs that have other gluten sensitivity genes (DQ1 and 3 that are included by Enterolab). It is your life and you get to live it any way you want but if you chose to go gluten-free the people at this board would love to help you with a wealth of knowledge and support.

Good luck and good health,

Leslie