Negative Biopsy Positive Ttg

[BillW]

Hi - I had a weak positve tTG blood test (level was 28, 20-30 were weak positive). My mother has celiac. I have no GI symptoms but have had some muscle aches and joint pain for the past year. Anyway, the report after my biopsy said "The mucosa of the duodenum appeared atrophic." I know it needs to be looked at under a microscope, so I asked the doctor what that meant and he said that it appeared "pale looking" (or something like that, I was a little out of it). Anyway, the biopsy was negative. Has anyone else had a negative biopsy with a positive (or weak positive) tTG level? What does that mean? Thanks.

Cheers,

-Bill

[Rachel--24]

Lots of people have had positive tTG with negative biopsy. It basically means you havent suffered enough damage to the villi that it showed up in the biopsy. It doesnt mean damage didnt occur...there likely is some damage but it could be easily missed considering the length of the intestines and the fact that they only take a few samples. It does NOT mean you dont have Celiac. With a positive tTG and a mother who is diagnosed Celiac...you can safely assume you have it and start the diet.

[BillW]

.... With a positive tTG and a mother who is diagnosed Celiac...you can safely assume you have it and start the diet.

Thanks for the reply. I thought that might be the case, so I started the diet last week anyway, the day of the biopsy.

[Rachel--24]

Good for you!! Good luck as you start out with the diet.

[Guest nini]

Rachel is correct, and good for you for starting the diet, and we are here to help you in any way we can! Welcome!

[slpinsd]

Bill,

I basically had the same experience. DR. noted 'mild flattening of the villi', told me to go gluten-free, and the biopsy report came back negative. After I went gluten-free i felt better.

One thing you could also do is look for a 2nd opinion on your biopsy. that's what i'm doing. i also did enterolab genetic testing, and found that i have 2 copies of the celiac gene, so that's confirmation for me to be strict about the diet.

[BillW]

I basically had the same experience. DR. noted 'mild flattening of the villi', told me to go gluten-free, and the biopsy report came back negative. After I went gluten-free i felt better.

One thing you could also do is look for a 2nd opinion on your biopsy. that's what i'm doing. i also did enterolab genetic testing, and found that i have 2 copies of the celiac gene, so that's confirmation for me to be strict about the diet.

Thanks again for the replies. Yes, this sounds like my experience. I'm going to stay on the diet for now, but I think I might pursue the second opinion or possibly additional testing (I've heard of enterolab but not sure what it involves). I'd like to be sure. I'm 44 and have never had any GI symptoms, so I wont be able to tell from going on the diet.

Cheers,

-Bill

[plantime]

Bill,

I basically had the same experience. DR. noted 'mild flattening of the villi', told me to go gluten-free, and the biopsy report came back negative. After I went gluten-free i felt better.

Mild flattening is still flattening. It is like being a little bit pregnant. Your doctor failed to realize that your celiac was caught at the beginning of the damage. This means less healing is needed, so you will be better in a shorter length of time on a gluten-free diet!

[BillW]

Mild flattening is still flattening.

I was under the impression that the only way to see if the villi were flat was under a microscope. I'm not sure what to make of the subjective comments of the doctor performing the exam vs. the results of the biopsy. I'm going to discuss this with my GI specialist when he calls back ... I was a little out of it immediately after the procedure, so I didn't go into the details.

[slpinsd]

I thought so, too. I thought if they can actually SEE the damage, it must be pretty bad.