So My Biopsy Results Are Back -?

[breann6]

the ONE sample they took that wasn't in the erythema areas he noted came back as 'not celiac' per the nurse. and i asked well since he took only ONE sample and i am responding to the diet- can we assume that I have at minimum Gluten intolerance? she said thats what celiac is, an allergy to wheat and instead of your throat swelling you just get a stomach ache. I thought GI was where you have the same reactions a celiac does- just don't get the damaged intestines.

So I said, is it possible that the nearly week of gluten free a week and a half before the biospy skewed the results of the ONE sample he took and that its possibly still celiac. and she said NO. you don't have it. but before the biopsy they said it could?

i said that i was still following the diet because i have not had to live in the bathroom the past week since being gluten-free and she said if you want to do that on your own fine, but the dr recommends you still eat gluten and that you increase your fiber.

I am getting a copy of the report- the prelim report i got the day of the biopsy and colonoscopy said several patches of erythema noted in the small intestines and some junction word i can't remember. but, they didn't biopsy any of those areas.

aRgh! I wish didn't even do the stupid thing now- i feel like i went through that mess for nada! Positive bloodwork is enough for me, even if its not for him. i am going to talk to my primary DR about repeating my bloodwork in a month or so to see if the numbers fall with the diet.

[Lisa]

I am sorry about your results. If you do have one positive blood test and you feel better on the diet, the answer is right in front of you.

The goal is to heal your body and if sticking to the gluten free diet keeps you out of the bathroom, if it were me, I would not opt for anymore tests.

Stick to the diet and be dilligent. You may have celiac or you may have an alergy.

Hope you feel better, and cheer up.

[jmengert]

I'm sorry--that has to be very frustrating. Personally, I think positive blood results are a good enough indicator for celiac. I had hugely elevated blood results, and that was enough for my GI to diagnose me with celiac. The diet worked for awhile for me, but I've been having problems again, and only now (2 years later) did I have a biopsy (he suspects colitis or microscopic colitis). My point is, with positive blood results *and* positive dietary results, it looks like you have celiac disease. One sample is simply not enough to go on, and it's a shame that your doctor doesn't see that.

So, I would go on with the gluten-free diet, and I hope that you continue to get better!

[nikki-uk]

ONE SAMPLE!!!

I can't believe that!!

When my son had his biopsy they took 18 samples and 2 for research!!!

As you've had a positive blood and you know gluten makes you ill I'd say you can call yourself a coeliac and be done with all the tests and stay gluten-free.

It must be very frustrating for you.

[Sweetfudge]

I've come to the conclusion that most doctors don't have a clue as to what they're doing when it comes to celiac disease. I say, if the diet helps you feel better, stay on it! Make sure you're getting all the nutrients you need, calcium, fiber, etc, but do what makes you healthy! The test results could have been affected by your eating gluten-free but I don't think the intestines heal that quickly.

Good luck!

[Guest cassidy]

It is frustrating that nurses and doctors can give you bad information. If you feel better on the diet then it doesn't matter if you have celiac, gluten intolerance, or if it is all in your head (which it isn't) you need to stay on the diet.

My blood test was negative and I have a very positive dietary response, I clearly have a problem with gluten as do you.

At least you are feeling better, that is what is most important.

[breann6]

thanks guys. this board is awesome!