Confused With Biopsy Results

[Luisa2552]

I'm so confused! I just came from my GI appointment following my biopsies. First I asked about the blood work- I new it was positive but I wanted numbers, tests, etc. They ran a TTG which he explained was IGG and IGA. He said my IGA was negative, but sometimes this can happen in celiac disease. The IgG was positive at a value of 19. He told me it had to be twice the value of high normal (10) to be considered celiac disease. So I'm 1 under. Then he said by biopsies showed villi blunting. He told me celiac disease would show atrophy and blunting indicates possible celiac disease. I have had a great response to gluten-free diet and I really don't need tests to confirm it. Now he is running the DLQ 2 and DLQ8 and a total IGA. I wonder how good a doc he is because he said he just recently heard of the gene tests. I'll be the first in the practice to have it done.

What is going on? I'm so confused. I really don't want to have a life long gluten-free diet if I don't have too.

[jerseyangel]

Hello,

You have positive bloodwork, positive biopsy, and a positive response to the gluten-free diet--you do have Celiac.

I had the gene test run after I was diagnosed, just because I was curious. I think it's nice to know.

[ravenwoodglass]

I'm so confused! I just came from my GI appointment following my biopsies. First I asked about the blood work- I new it was positive but I wanted numbers, tests, etc. They ran a TTG which he explained was IGG and IGA. He said my IGA was negative, but sometimes this can happen in celiac disease. The IgG was positive at a value of 19. He told me it had to be twice the value of high normal (10) to be considered celiac disease. So I'm 1 under. Then he said by biopsies showed villi blunting. He told me celiac disease would show atrophy and blunting indicates possible celiac disease. I have had a great response to gluten-free diet and I really don't need tests to confirm it. Now he is running the DLQ 2 and DLQ8 and a total IGA. I wonder how good a doc he is because he said he just recently heard of the gene tests. I'll be the first in the practice to have it done.

What is going on? I'm so confused. I really don't want to have a life long gluten-free diet if I don't have too.

Your doc, well he's not the greatest.

With positive blod, positive dietary response and villi blunting there really is no doubt. Do not let him talk you into poisoning yourself for a couple months just so he can say 'Yup now the villi are totally destroyed it's definately celiac.' And get the money for a repeat endo.

[gfpaperdoll]

yep, your doctor needs help!!!

The gene test at Enterolab.com is only $99.00, I think, might be cheaper there than at your docs office.

I wound not be giving him any of my time or money

[jerseyangel]

I had my gene test done through Enterolab--it was $169 ($149 + $20 s&h). That wasn't covered by insurance--

[Darn210]

If you need to hear it from a doctor in order to commit to a life long gluten-free diet, then get a second opinion. You won't have to repeat the testing, they will interpret the results from your tests that have already been done.

I once had a doctor that recommended 2nd opinions (at times - to put people at ease, a 2nd set of eyes, life long diagnosis). She said if your doctor is offended that you want to get a 2nd opinion then you don't want them for your doctor.

[aikiducky]

Your doctor is just old-fashioned. It used to be you had to have total villous atrophy before they'd call it celiac disease but at least here in Holland the new guide lines are that villi blunting is an earlier stage of celiac. So you just caught it early.

I agree with the idea of a second opinion. A more knowledgeable doctor would probably be happy to give you an official diagnosis with these test results I'd think.

Pauliina

[Luisa2552]

Thank you all. you confirm what I fell. My doc is old school ( the guy has to be in his 60's) Maybe it's better he doesn't 'officially' diagnose me- better from a insurance point of view.

[GFhopeful]

i had villi bluting too and a good response to the diet so.... and i didn't even have the positive bloodwork. i am going to mayo clinic next month as i have some remaining symptoms (low thyroid, headaches, fatigue, etc) that are getting better but not all better. i never had the gene test run yet either so i'm guessing they will do it there. but i heard the same thing as the previous post, that villi blunting means they just caught it early. i was so sick that it's hard to believe that it was caught early but that's what the biopsy showed. good luck to you. i feel that i have celiac just from the diet response but guess the second opinions can't hurt.

[PattiD2]

My daughter had original positive blood test that came back down to normal after 10 weeks on gluten-free diet. Moderate but not complete response to gluten-free diet. Lymphocytes on first biopsy, clear on follow up biopsy at 10 weeks gluten-free. Doctor has discussed gluten challenge some day in the future. I'm not convinced that we could go through with it.