Positive Blood, Possibly Negative Biopsy

[Lisa79]

Well DD had her biopsy today, she said it actually looked very good, we don't have the biopsy results yet so it not negative, but this got me thinking what if it is negative, why would you have positive Antibodies if you didn't have celiac??

I am sure this has been mentioned many times but any replies would be great.

I am sure we will decide to keep DD gluten free even if the biopsy does come back negative.

Thanks

[ravenwoodglass]

There can be many reasons for a false negative on the endoscopy. We have 22 ft of small intestine and the damage can be patchy and there are changes that precede the full villi destruction that some doctors are not aware of to name just a couple. I am glad to see that you are going to put her on the diet no matter what the results of the biopsy are. You can start today and you may have the answer by her symptom resolution before you even go to the return appointment for the biopsy results.

[Tim-n-VA]

As Ravenwoodglass said, the damage to the intestines might not have yet reached detectable levels. A less likely possibility is a false positive on the blood tests but some other autoimmune diseases could cause that.

It might be sematics but one concern is that you said "keep" her gluten free which sounds like she might already be on a gluten free diet which could distort the test results.

[oceangirl]

I had positive antibodies and a negative biopsy (however, I had been glutenfree/lite for 4 months prior to biopsy) There is NO Question that gluten causes damage to me and genetic testing furthered that proof for me. I think they will understand in the future that there is a spectrum of disease caused by gluten. By the way, the Mayo clinic just completed a comprehensive study using antibodies (I think only) to determine the incidence of celiac disease in this country and they found its incidence has quadrupled since earlier numbers. (This story was on MSNBC; maybe you can still find it.)

Good luck,

lisa

[JennyC]

Please don't let the doctor convince you that she does not have celiac disease if her biopsy is considered negative. There is a medically accepted term called latent celiac disease. Latent celiac disease takes place when there is positive serology and symptoms but a negative biopsy. The thought is that celiac disease is present, but not enough damage has been done YET to produce villus atrophy. Celiac symptoms and a positive IgA tTG are very diagnostic of celiac.

[Lisa79]

Sorry my mistake, I should have said put her on Gluten free, not keep her on gluten-free, she has been eating gluten prior to the biopsy.

My husband wants to wait for the results, but I would like her to go gluten-free straight away.

I had a negative biopsy years ago, but then saying that, testing has improved since then, but if only I had gone gluten free back then I might not have had all the issues I have had leading up to finally getting a positive biopsy. I had ovarian cysts removed, migraines, anxiety and a gallbladder removed, IBS, major constipation which may have lead to prolapse and then finally get diagnosed with celiac disease.

Thanks for the replies.

[Roda]

Well DD had her biopsy today, she said it actually looked very good, we don't have the biopsy results yet so it not negative, but this got me thinking what if it is negative, why would you have positive Antibodies if you didn't have celiac??

I am sure this has been mentioned many times but any replies would be great.

I am sure we will decide to keep DD gluten free even if the biopsy does come back negative.

Thanks

My doctor said that my small bowel didn't look too bad only minor changes and he did not think the biopsy would be positive. Well when they called with the results it was positive. So they really can't tell by visually looking at it unless it is really bad. They need the histology for that. The biopsy can have its limitations, and with positve antibodies it is likley she has it.

[Lisa79]

Thanks for the replies, guess we will just have to wait and see what the results say, but I will be discussing with the GI and DH putting her gluten-free even if the biopsy is neg. Interesting about the latent celiac disease.

Thanks

[JennyC]

Thanks for the replies, guess we will just have to wait and see what the results say, but I will be discussing with the GI and DH putting her gluten-free even if the biopsy is neg. Interesting about the latent celiac disease.

Thanks

Some doctors are really set in their ways. If the GI dismisses you because of a negative biopsy, please find a new doctor for your child. Sometimes we really have to push hard and advocate for our children.