Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Igg Testing

Amber M

Recommended Posts

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

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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!

Link to comment
Share on other sites
Amber M Explorer
Amber M
  • Author
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!

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.

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      124,719
    • Most Online (within 30 mins)
      7,748
    Green1957
    Newest Member
    Green1957
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Celiac Diagnosis from Bloodwork Only?

      By trents · Posted

      There are some causes besides celiac disease for elevated tTG-IGA, such as cow's milk protein, some other bowel diseases, NSAIDs, a certain blood pressure med and parasitic infections but the chances of that being true are not very high compared to the cause being celiac disease. And even with CMP (Cow's Milk Protein) most of those cases involve people who already have celiac disease.   
    • cristiana
      Extreme bloating even gluten-free

      By cristiana · Posted

      Hi @Schellee94,  it is good to know that you have found this a helpful thread.  Do let us know how you get on! Cristiana
    • trents
      Kachava

      By trents · Posted

      Did you purchase it thinking it was gluten free? The company doesn't advertise it as such do they? Barley is not one of the eight main allergens that the FDA requires to be posted in the allergen info. Wheat is but not barley. But good catch. We don't see many products with barley and rye as ingredients and it is easy to get lazy, not really read the detailed ingredient list and to just go straight for the allergen list.
    • TraceyG
      Celiac Diagnosis from Bloodwork Only?

      By TraceyG · Posted

      @Wheatwacked thank you for checking in about choline. I do meet me recommended amount on a plant-based diet already, per my nutritionist. Thankfully, I am not intolerant to soy and the cruciferous veggies I enjoy! 
    • TraceyG
      Celiac Diagnosis from Bloodwork Only?

      By TraceyG · Posted

      @Wheatwacked thanks for your input. I am fully committed to being gluten-free if I truly have celiac disease.  I suppose my question is more so wondering if that blood test means I definitely have celiac disease. I had one doc look at the results and tell me to ignore them if I don’t have the classic celiac symptoms. The next doc (a few months later, when viewing the same results) said the results were suspicious and might mean gluten sensitivity, but then had her nurse call me later the same day to say I actually have celiac disease based on the results. So my care team seemed a little unsure. It sounds like, from this forum, that the general consensus is any abnormal blood results indicate celiac.
×
×
  • Create New...