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nora-n

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Everything posted by nora-n

  1. nora-n
    Any IgA type test will be false since you make too little of IgA. The antibody tests from Enterolab will also be negative since they all are IgA based, so that won
  2. nora-n
    I woud suggest getting the new deaminated gliadin tests done, both the IgA and IgG versions, since we have had several people here with symptoms and negative ttg, but positive DGP. That one is very specific for celiac and can pick up patchy celiac. The ttg test is very bad at picking up patchy celiac. Patchy celiac is the most common for of celiac nowadays...
  3. nora-n
    Yes you would still need to eat gluten, but the IgG versions of these antibodies often hang around much longer, up to a year. I can
  4. nora-n
    About MS, many of them have started a gluten-free diet since it seems to help them anyway. As for diagnosis, they are often given steroids and other immune suppressants and at least steroids make diagnosis impossible, as steroids cause false negative gut biopsies.
  5. nora-n
    There are some forums for those with neuro symptoms from gluten, and they usually have negative gut biopsies and DQ1..... Just google hadjivassiliou and you get several articles on DQ1 and gluten ataxia. The antibodies responsible for gluten ataxia are antigliadin, and ttg-6, those for DH are ttg-3 and those for ordinary celiac are ttg-2. Professor...
  6. nora-n
    I think you should go back on gluten before the biopsy, and can you get another one some weeks later if by chance this one is negative? Was it the antigliadin IgA and /or IgG that was highly positive? Celiac is not an allergy, those reactions and tests are IgE, but often they test the antigliadin antibodies too when allergy testing for foodstuffs...
  7. nora-n
    A large proportion of the general population has DQ2 and some less have DQ8, and only about 2-3% of the general population have ttg antibodies, so having these genes does not mean too much.... HLA DQ is about the risk of having celiac. The greatest risk is having a sibling with celiac and sharing the same DQ genes, tehn the risk is 40%. Also, DQ genes...
  8. nora-n
    This was the total IgA test, and the ttg IgA test, so the ttg test is not valid, and they should have automatically ran the ttg IgG test. Good on them for testing for the total IgA in the first place.
  9. nora-n
    I am in Europe, too, and I paid more for the shipping than for the gene test at Enterolab in Texas. I had a gene test here but they only test for positive or negative for DQ2 or 8 so this did not help. The double DQ5 explained a lot to me, the neuro issues and extreme sensitivity. (Hadjivassiliou found that about 20% of his gluten ataxia patients were...
  10. nora-n
    navigator, there are some abstracts on gluten challenge on pubmed, and it may take six weeks, or it may take 3 months, or much longer to get a diagnosis after going back on gluten. Or , never. My biopsy was negative after five weeks back on gluten, and in the literature the shortest time I found was six weeks.
  11. nora-n
    I have read through some abstracts on pubmed about gluten challenge, and the shortest time I read was 6 weeks. Another abstract says that time also is an issue, meaning if they test a group of previously diagnosed celiac children, some will turn positive after six weeks, some after 8 weeks, and some after six months, and even many more months. I...
  12. nora-n
    The most common form of celiac nowadays is patchy celiac, and the ttg test is known to only be close to reliable with total villous atrophy. even then it misses 20% or more (depending on how hight the trhreshold in the lab is set) of those with severe celiac. With patchy celiac, only 40% will test positive. Now the newest test, the deaminated gliadin...
  13. nora-n
    In the old days they demanded total villous atrophy, hence this looks borderline to them. Just google what the well-known finnish celiac researcher M
  14. nora-n
    Your tests are negative because you have been gluten free for a while. You had dramatic symptom improvement off gluten,and dramatic symptoms back on gluten, and some people get the diagnosis after a gene test. There is also another test, where they take biopsy samples of the gut, and look at it immunologically, incubate it with gluten and test if the...
  15. nora-n
    I would say the antibody numbers going down after going gluten-free proves you are celiac too.
  16. nora-n
    Some people who had gone gluten free order a private test with enterolab.com as their tests can pick up the antibodies for a long time after going gluten free. But they cannot diagnose celiac per se. Just gluten sensitivity,and casein and soy intolerance (which may be huge problems for some too)
  17. nora-n
    blunted villi, slightly positive ttg test, two DQ2,5? (go over to en.wikipedia.org and check out the charts on the alpha and beta chains,and this does look like two DQ2,5 no matter what is missing on the one 05* alpha chain, since one 05* alpha chain alone is enough for celiac even without the 0201 or 0202 beta chain) Mayo are known to be very conservative...
  18. nora-n
    livebetter, are you sure you actually do not have DH? Dermatitis herpetiformis is caused by ttg-3 antibodies, and one must go completely gluten free. It may take up to a year or even more for it to go away even on a very strict gluten free diet, so three months may not be enough. The ttg-2 test is notorious for giving a lot of false negatives with the...
  19. nora-n
    Here is something that says 9 out of 37 celiac children did not have DQ2 or DQ8 Open Original Shared Link still it does not say what genes they had I guess most had half genes and one or two had other genes, based on other articles of the same kind
  20. nora-n
    yes, I did not decipher it all since I got hung up on the alphabet soup letters. I did not figure out what was actually tested for, or what were the results vs what was tested for. Thank you very much for explaining it all! So glad you explained it!
  21. nora-n
    I have an old link somewhere that says several % have half genes, here is one from pubmed about half genes: Open Original Shared Link and now just recently the dutch found something similar
  22. nora-n
    Now we found articles that say the japanese celiacs have DQ9, simply because DQ9 is the main gene over there by number. Now DQ 9 differs from DQ8 by one amino acid only , and it is capable of binding gliadin molecules in a 3D model. (0303 is DQ9) Now 6% of celiacs have half genes, and 2% have other genes, so why doctors can say for sure that a symptomatic...
  23. nora-n
    if you check the wikipedia charts, you see that DQ8 is 0302. 0303 is DQ9 and DQ7 is 0301. They are looking for 0301 too since if one has DQ7 with the 05* alpha chain, then that is half of the trans DQ2 if one has 0202 in the beta chain.
  24. nora-n
    Interesting, we have had some half-DQ2 here, with diagnosis and symptoms, but no half DQ8 (probably for lack of testing) by the way, I read that the 05* alpha chain contributes more to the celiac risk than the beta chain 02*. Wikipedia says so too. You can find some info on half genes here, try searching. But this is fairly new because the testing was...
  25. nora-n
    i read on other forums that some phoned the labs and they actually had tested for the other genes, but not reported them to the doctor (I guess to not to confuse the doctors, too much information) and they got all the results, both alpha and beta chains. So I suggest you try to find out if they tested alpha and beta chains. They started doing that the...
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