Several years ago I was tested for Celiac by blood test which was positive. They followed up with a biopsy which was negative for Celiac but positive for Crohn's. Since then I have had SO many physical problems such as fibromyalgia, rashes that are mostly upper trunk, face and scalp, fatigue with a capital F, interstitial cystitis and some thyroid issues. I saw my doctor for an EGD/colonoscopy followup today and he told me I was again negative for celiac on biopsy done a month ago and said I was one in 500 people who have pos. serology and negative biopsy. My question is DO I possibly have it? I have heard on another message board that because I had a positive serology I have it. Can you even have Crohn's AND Celiac at the same time? I'm a nurse but I'm out of my element with this one. I have an appt with my internist on Feb 4th and was thinking of having him run the blood work again just to be safe but I KNOW he told me I was positive years ago.

HELP!?

Sandy

If you have positive serology, you have Celiac Disease. The antibody tests are very specific for Celiac Disease. A negative biopsy just means that the villi damage hasn't shown up yet. So trust your doctor when he tells you that you have Celiac Disease. And it is definitely possible to have Celiac Disease and Crohn's Disease. I'm willing to bet that going on a gluten-free diet will have a profound effect on improving your symptoms. But please trust what your doctor is telling you. He definitely knows what he is doing. Good luck,

-Brian

What were your blood results?

I have no idea. The one and only time I had the blood work done for Celiac was about 5 years ago and he told me it was positive. I believe I have a EGD/Colonoscopy report somewhere that mentions the positive result as well, but the negative biopsy results as well but it doesn't go into detail as to what the blood results were exactly.

I have a very good doctor and I'm just shocked that because of the positive bloodwork I should really be on a gluten free diet! Just to be sure I'm going to get my primary doc to re-run the tests for me on Feb 4th when I see him for a checkup. It seems to me my doctor would have said something to me instead of leaving me all these years to keep on eating normally, especially when he knows all the other medical problems I've had.

I do know not to start the diet til after the blood test is done.

Anyone else out there have positve bloodwork and negative biopsy results and were not told by your doctor that you HAD celiac?

Thanks for the responses...I feel kinda lost!

I'm kinda new to this too, but this is the way I understand it (and i trust someone to correct me if I'm wrong!). The blood work shows that your body is responding incorrectly to gluten. The biopsy shows that its so bad that your stomach is badly damaged by it.

The medical definition of celiac is that you have to have the gut damage and the blood response. If you only have the blood response, it doesnt fit the standard definition of the disease . . .BUT . . .your body is still reacting badly to gluten and you are likely to have tons of other symptoms (other than the typical D) because of your body's inability to properly handle gluten.

I've had the blood test recently, and told the doctor outright I have no intention of having the biopsy or whatever other invasive tests they use to confirm the villia (or whatever) are dying off (or whatever lol). I already feel better not eating gluten, and thats all you need to know. You dont need a doctor to tell you to stop eating gluten - try it, if it helps, stick with it. (although if you really want another blood test, do that before you stop eating it)

Cara

The bloodwork for celiac is actually a group of tests. Each one individually is less important as looking at them as a whole. My question would be which of the celiac tests did you test positive on? If it was the Ttg or Ema, those 2 are hightly predictive of celiac disease. I think it would be wise to get a copy of your bloodwork, including the lab ranges. If you had that in fromt of you, it would help you (and us) better answer the question.

Also, I think your doctor's figure of 1 in 500 with celiac getting a negative biopsy while still having positive serology may be a bit low. Damage to the villi can be patchy. If the doctor doesn't take enough samples, or takes them in an area that has not yet experienced extensivve damage, one could definitely get a negative biopsy result but still have celiac disease.

If your doctor, or several doctors, have told you that your serology is positive for celiac, you very likely have it.

Hi Sandy its loraleena from over at ICnetwork. Why don't you ask your doc for the old results and post them. If you have positive serology you have it. Like I said the damage to your gut may be minor right now, but continued eating of gluten will slowly chip away at your health as it may already be doing since you have IC and other issues. You could always go gluten free for a month and see if you notice any differences. If you add it back and have reactions, then you have your answer anyway. Make sure you don't go gluten free before testing though.