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

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!

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.

Archived

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

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


  • Member Statistics

    • Total Members
      131,382
    • Most Online (within 30 mins)
      7,748
    victimm
    Newest Member
    victimm
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • lauramac
      COVID19 and getting glutened

      By lauramac · Posted

      I was diagnosed with Celiac Disease abput 10 years ago. When I was initially diagnosed my only "symptom" was persistently low iron (that occasionally dipped into anemia). After diagnosis,  over time, I started to develop symptoms when exposed to gluten--they have been overall relatively minor, but have increased over time (and yes, I realize my guts are likely being wrecked regardless of the symptoms) on the rare occasions I've been exposed to gluten. I had COVID19 last week (now testing negative) and was glutened last night (never trust anything labeled gluten-free in a mixed environment). I had my traditional symptoms (sharp gas pains, burping, nausea, stomach ache) but they were accompanied by new, more intense symptoms (muscle cramps all over my body--feet, calves, biceps, neck, shoulders, jaw, abdomen, I'm still sore today and cold sweats). I spent about 6 hours writhing before I felt well enough to get up.  I have been told by my allergist that COVID19 can cause your immune system to hyper react. I'm wondering if that's what happened here.   Has anyone else had experience getting glutened post COVID19? Relatively shortly after recovering from COVID19? Was it a more extreme reaction or same? I can't seem to find any articles on this, so I thought I'd ask the community.  Thank you!
    • Rogol72
      Draft gluten-free ciders… can they be trusted ?

      By Rogol72 · Posted

      A friend of mine is in the bar trade most of his life and has never heard of lines being mixed for different type of beers and ciders. Better to stick with cans.
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      Thanks very much for confirming my suspicion @Scott Adams! That helps a lot because I'm really trying to track down and get rid of these sources of cross-contact and so I'm going to just rule out the draft ciders and hope that helps. Also @Rogol72 its nice to hear you haven't had a problem on that side of the pond - draft cider lines being used for cider only certainly sounds like the right way to do it, but I think that must not always be practiced over here! 
    • Zuma888
      Gluten challenge and Hashimoto's Thyroiditis

      By Zuma888 · Posted

      I didn't ask a doctor about this actually. I did ask several doctors a long time ago and they told me gluten has nothing to do with hashimoto's. One of them told me to do a gluten challenge to test for celiac, but at the time I was in graduate school so couldn't afford to be even more ill than I was. If you have the symptoms, I really don't advise you to do a gluten challenge. It messed me up mentally and physically for months. At the same time, I benefitted from doing the challenge in the sense that it convinced me that all my symptoms were truly from gluten - even stuff like insomnia! So now I am terrified to eat gluten, whereas before I would have a little once in a while and not notice anything dramatic. 
    • Winnie-Ther-Pooh
      Gluten challenge and Hashimoto's Thyroiditis

      By Winnie-Ther-Pooh · Posted

      I am in a similar situation where I can't feasibly do a gluten challenge but have all the symptoms and I have 2 celiac genes. I'm curious if your doctor advised you to eat as if you had a diagnosis or if they were more dismissive about it. 
×
×
  • Create New...