Blood Test Positive, Dna Postive, Biopsy Neg. Celiac?

[greenhillsfive]

Hi.

I have been told by my mother (I am now 51) that I had celiac as a baby. Then I did a DNA test which came back positive. The biopsy is negative. I have had arthritis since my 20s and now have peripheral neuropathy. I get canker sores (always have) almost every month. My doctor who did the biopsy says I definitely don't have celiac.

Do you think I am celiac? I asked my mother how they knew back then and she said I had green poop. I don't know what to do!

My autistic son has been gluten and casein free for 11 years so I am very experienced with the cooking but the eating is another thing!

Thanks

[IrishHeart]

You do not "outgrow" celiac. If you had it as a child, you still have it. That is old school, erroneous thinking that has resulted in many people developing autoimmune diseases or cancer, etc. because they did not follow a gluten-free diet for life.

The positive DNA test means you are predisposed to the disease. The disease is hereditary.

Your post title says Positive blood test...well, a positive blood test is POSITIVE. There are no false negatives.

Canker sores, arthritis, peripheral neuropathy are all consistent with celiac and/or other autoimmune diseases.

Negative biopsies happen frequently--as many people on here will tell you--and unfortunately, that leaves many undiagnosed properly.

Since you are so familiar with a gluten-free diet, it should be easy for you!

I am wondering...if you had a positive blood test, why didn't you go gluten-free right away?

[IrishHeart]

just curious....does your Mom have any symptoms??

[shopgirl]

The chances of a false positive blood test is astronomically rare. Welcome to the club.

[greenhillsfive]

Thanks for your replies.

I had the biopsy a couple of years ago. The Dr. said the DNA test didn't mean I had it since my biopsy was normal. Believed him then. I didn't hear from my mother about celiac until recently, which was why I requested the blood test.

Yesterday they called to give me blood test results (from my neurologist - tested me for Lyme, Lupus, heavy metals and celiac).

So today I have started gluten-free!!

My parents don't have any symptoms but I wonder about the autism with my son. He definitely can not have gluten (red ears, red face and a temper that matches). I wonder what may have been differnt had I been gluten-free during my pregnancy.

Thank you so much and I can't wait to start feeling better!

[IrishHeart]

Welcome to the board and I hope you feel better soon!! :)

[ravenwoodglass]

Thanks for your replies.

I had the biopsy a couple of years ago. The Dr. said the DNA test didn't mean I had it since my biopsy was normal. Believed him then. I didn't hear from my mother about celiac until recently, which was why I requested the blood test.

Yesterday they called to give me blood test results (from my neurologist - tested me for Lyme, Lupus, heavy metals and celiac).

So today I have started gluten-free!!

My parents don't have any symptoms but I wonder about the autism with my son. He definitely can not have gluten (red ears, red face and a temper that matches). I wonder what may have been differnt had I been gluten-free during my pregnancy.

Thank you so much and I can't wait to start feeling better!

Wow a neuro that is smart enough to consider celiac! Wish mine had.

Welcome to the board and be strict with the diet as the neuro effects can make us more sensitive to trace amounts. Neuro issues can take a bit longer than gut issues to resolve so hang in three. I hope your feeling better soon.

[IrishHeart]

Wow a neuro that is smart enough to consider celiac! Wish mine had.

Me, too...I saw 3 of them!!!

[cassP]

Thanks for your replies.

I had the biopsy a couple of years ago. The Dr. said the DNA test didn't mean I had it since my biopsy was normal. Believed him then. I didn't hear from my mother about celiac until recently, which was why I requested the blood test.

Yesterday they called to give me blood test results (from my neurologist - tested me for Lyme, Lupus, heavy metals and celiac).

So today I have started gluten-free!!

My parents don't have any symptoms but I wonder about the autism with my son. He definitely can not have gluten (red ears, red face and a temper that matches). I wonder what may have been differnt had I been gluten-free during my pregnancy.

Thank you so much and I can't wait to start feeling better!

i dont think his autism has anything to do with how well you stuck to the gluten free diet while pregnant. imho, he has some of your genetics.. and autism seems to be more common amongst people with autoimmune genetics. there must be some sort of link as most kids with autism improve on a gluten & casein free diet. i know some members may disagree with me- but i feel very strongly about this. i wouldnt blame yourself at all...

[ravenwoodglass]

i dont think his autism has anything to do with how well you stuck to the gluten free diet while pregnant. imho, he has some of your genetics.. and autism seems to be more common amongst people with autoimmune genetics. there must be some sort of link as most kids with autism improve on a gluten & casein free diet. i know some members may disagree with me- but i feel very strongly about this. i wouldnt blame yourself at all...

I agree, no reason to blame yourself as you have no control over your genes. I have to wonder if in some cases of autism, the ones that respond to the diet, if the autism is a result of the antibodies action in the brain. Not all cases of course but I have noticed that some of the autistic type of behavior in the folks affected with Aspergers in my own family was much relieved on the diet.

[nora-n]

I have read postings by people who had 5 biopsies before getting a positive one, and postings by people who finally got the pill cam afrer several negative biopsies, and the celiac was in the wrong end of the small intestine....it is so easy to miss. Nowadays it is typically patchy.

Also, I have DQ1 and those have a different mechanism of gluten intolerance, they get antigliadin antibodies in their brain.

just google hadjivassiliou and you see several papers by him. About 20% of his gluten ataxia pateitns have DQ1.

There are also at least a couple of forums where those people post, so ti is not so rare.

DQ1 rarely have a positive biopsy.

(for the forums, check gluten intolerance at braintalk and at neurotalk, and there is glutenfreeandbeyond.

[greenhillsfive]

Thank you all for the encouragement. 4 days and counting. My son is happy to have a commrade in the house!