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Amber M

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Amber M Explorer
Amber M
Posted

Okay here's the situation. I'm sure I have gluten ataxia, have the genes, been gluten free for a year and suddenly having attacks again (I think from yeast overgrowth), but I was on the National Ataxia Foundation site and they listed the blood test for this as: Only at "Quest" Labs, Gliadin Antibody Panel #3517N (NON Deamidated). The only one specifically for gluten ataxias. I emailed them as asked if I had to be eating gluten to have the antibodies show up. The Manager of Client Services, Robert M. Panarelli email back saying I did not have to eating gluten, the antibodies would show up no matter what and if I were in an attack or just coming out of one, they would be even higher.

So, I went on their test lists and found the test 3517N and under Clinical Use it states: "The antibody is Undetectable when patients with hypersensitivity are placed on gluten-free diets." I wrote back to Quest about this and the latest reply is: discuss this with your doctor and they will know what to order for tests. The problem is, I do not have, nor can find a doctor in my area (Maine) that knows a darned thing about gluten ataxia, just Celiac itself. (I do not have the digestive type)

I had already found information about this before and was told to have the "Quest" lab test#8889X. I had it and it came back negative. I was 100% gluten free at the time of this test recently.

The national Ataxia Foundation states that most labs do the "Deamidated" form of test, not the "NON-Deamidated" which means it will show "Celiac" and not Gluten Ataxia. They say Quest is the only one that does NON-Deamitdated.

I am soooo confused and can not seem to get an answer. My PA is waiting for Quest to investigate whether or not the test 8889X was Deamidated or NON-Deamidated. But it appears I may have had the wrong one anyway. In the mean time I am also being tested for heavy metals and Lyme's just to rule them out. Can any one help me with this???? Do I have to be eating gluten, and are these the right tests? Thanks, Amber

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linda-r Rookie
linda-r
Posted

I am not an expert, but I thought Prometheus was considered to offer high quality testing for celiac. Perhaps their customer service can help you. Good luck!

Amber M Explorer
Amber M
Posted
  • Author
I am not an expert, but I thought Prometheus was considered to offer high quality testing for celiac. Perhaps their customer service can help you. Good luck!

Thanks, but National Ataxia foundation says "Quest" is the only one that does the "NON-deamidated" for Gluten Ataxia (not standard Celiac) and now Quest doesn't want to tell me what test to have, they say ask my doc. The problem is, my doc doesn't know either! I am back to feeling so alone in geting help. Anyone else????? Thanks.

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