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
      130,186
    • Most Online (within 30 mins)
      7,748
    Jackie49
    Newest Member
    Jackie49
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      New to gluten free living, in5ro and small question

      By trents · Posted

      First, welcome to the forum, @boy-wonder! Second, a little clarification in terminology is in order. Granted, inconsistency is rampant when it comes to the terminology associated with gluten disorders, but it has more or less become settled in this fashion: "Gluten intolerance" is a general term that car refer to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). "Gluten Sensitivity" is the shortened version of NCGS. Third, Celiac disease is not an allergy to gluten. It is an autoimmune disorder characterized by gluten ingestion causing the immunes system to attack the lining of the small bowel, causing damage to it over time due to the constant inflammation that wears down the "villi" (mucosal finger-like projections that make up the lining). Over a significant period of time as gluten continues to be consumed, this generally results in impaired nutrient absorption. There are specific blood antibody tests available to check for celiac disease but the testing will not be valid while on a reduced gluten diet or a gluten free diet. Those already having having begun a gluten free diet must go back to consuming generous amounts of gluten for a period of weeks if they wish to pursue testing for celiac disease. Fourth, NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both. Fifth, you state that you are convince you don't have celiac disease by are just "gluten intolerant" (aka, gluten sensitive). How do you know that? It seems to me you are making a dangerous assumption here. I suggest you consider getting formally tested for celiac disease.
    • AllyJR
      Gluten free parakeet food

      By AllyJR · Posted

      Has anyone found a gluten free parakeet seed mix? I can't find a single one! My doctor wants me to make sure all pet food in the house is gluten free but I'm not sure if that's even possible with parakeets. We love our birds so much! I'm wondering if anyone has ever made their own bird seed mix if gluten free ones are not available. 
    • boy-wonder
      New to gluten free living, in5ro and small question

      By boy-wonder · Posted

      Hi, new member. About me, I had been suffering with weight gain, bloating and irregular and extreme bowel habits for a year or so. For example, I went on holiday in 2023, then again I  2024 at the same time of year and every shirt I wore in 2023 didn't fit anymore, couldn't even do the buttons up. Being in my mid 50s I put it down to age and middle aged spread. I'd been lucky all my life having good metabolism and being able to eat anything and as much as I like without putting on any weight, it drove my other half mad. Over a conversation with a friend health and age Related stuff came up and he mentioned someone he knew who had recently found out they were gluten intolerant,  I looked it up and had every one of 8 or so symptoms listed. Bloating,  weight gain,  headaches, brain fog,  constipation, etc etc. I took the decision to give going gluten free a try. Within 1 week I had lost 4 lb, now 7 weeks in I've lost 13 lb. I feel much better in general,  the bloating has severely subsided, it used to keep me awake at night as I felt so uncomfortable.  So pretty much a success story, as everyone here knows,  going gluten free isn't always easy, and eating out can be awkward,  but I consider myself lucky that I appear to have an intolerance rather than an allergy or being celiac.  I can deal with most of the gluten free options at the supermarket but, the big one for me is bread, I love bread, and the gluten free options I've tried are pretty poor. I was at a posh black tie event last night and chose all the food options I thought would be gluten free,  however,  there was bread on the table and I couldn't resist it, I had I small piece of bread,  god it was good, I wanted more but I resisted. Today I feel a bit dodgy, my stomach is churning, and I generally feel a bit urgh.  So here's the question, is that really down to 1 small piece of bread or is it coincidence?  I'd be interested in hearing how other people have reacted to a similar situation,  as I was considering having a day off every now and then and enjoying some lovely fresh bread.
    • ValerieC
      Guide to colleges for celiac disease

      By ValerieC · Posted

      Does anybody know of a guide that ranks reevaluates universities and colleges in terms of their accommodation of celiac disease or food allergies?   Thanks in advance for any leads! Valerie 
    • thejayland10
      TTG IgA and IGA elevated mildy

      By thejayland10 · Posted

      thank you, i have been doing that the last few weeks and will continue to do so. I had not had my ttg iga checked since I was diagnosed 14 yrs ago so I am not sure if they ever dropped below the 15-20 range.    all my other labs are completely normal but I am concerned that this may be signs of refractor celiac or something else since I'm so careful with gluten-free diet 
×
×
  • Create New...