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nora-n

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Everything posted by nora-n

  1. nora-n
    Here in Europe we recommend to stay on gluten til the endoscopy and testing is done.
  2. nora-n
    You are only positive for one of four genes?? Dq2 or DQ8? I think he means the 05* alpha chain, the 02* beta chain, the 0301 beta chain and Idontknow, maybe another alpha chain. Nonsense, you only need one of these genes, DQ2 by trans or by cis, the 05* alpha chain, or the DQ8 gene to have a high risk for celiac. It is not possible to have all three...
  3. nora-n
    Those were no celiac blood tests, just total IgA and so on.
  4. nora-n
    The excact level of antibodies vary widely between people, so this is not an excact science. Actually, the Enterolab tests are more about gluten sensitivity in relation to microscopic colitis and they found out that many other people can have issues with gluten too. But they are not an excact science either. I really think the 8 after 4 months gluten...
  5. nora-n
    Maybe corn allergy is hard to test for. I think there is a good webpage about corn allergy. I googled and found this one Open Original Shared Link and it does look like the one I have seen.
  6. nora-n
    when on the gluten challenge, the intestines felit like barb wire in them, you mentioned glass. Must be the same thing. And pain in knees and other places. i looked over a diary I keep in google docs a while ago, and I had forgotten half of it or most of it. I do not recollect any hardships during the challenge, but when I looked at what I wrote back...
  7. nora-n
    I have a similar hypothyroid story, thyroid meds almost did not work. Turns out I am double DQ5. Dr. Hadjivassiliou found 20% of his glutan ataxia patients are DQ1 (DQ6 and DQ5 are DQ1) There are even two-three forums for people like that, where many are DQ1 but they have lots of issues from gluten. There was at least one officially diagnosed...
  8. nora-n
    So sorry the test turned out negative, but the AG test does only find some celiacs. Yes, the article does explain a lot. The reason the doctors (those who decide the international concensus on celiac testing) are so strict, old-fashioned, or whatever, might be that we in several countries get money from the government if diagnosed celiac. That is...
  9. nora-n
    There is at least one very good private website that explains about corn allergy. It is different from celiac. Besides, the prolamine in corn may theoretically be toxic to some people but there is no research on that that I know of.
  10. nora-n
    The short answer is that floating stools are typical for celiac but I do not know how many other reasons there might be for floating stools. In celiac, absorption of fatty acids is diminished because of gut damage. Celiacs have low vitamin D and fat-soluble vitmains for that reason.
  11. nora-n
    I am double DQ5 and Hadjivassiliou found that 20% of his gluten ataxia patients are DQ1 (DQ5 and DQ6 are DQ1) There are even three forums for people like that so it is not so uncommon. (the DQ1 gluten thing. Also, they are way way more sensitive to small amounts of gluten than the DQ2 people)
  12. nora-n
    A month glutenfree will maybe, or most likely, obscure the results but the lab needs to know you have been gluten free for a month, that way they can look for more subtle changes.
  13. nora-n
    Yes that is what I meant, I was not clear, AGA = short for antigliadin antibody. Yes, it can be confusing and frustrating. To add to the confusion, some labs call tests almost fantasy names, like some labs list endomysium IgA and IgG and there is no such thing as endomysium IgG so they mean ttg IgA and ttg IgG, and the newest fad is calling the new...
  14. nora-n
    There are a few people here that are diagnosed celiacs with other genes, another one was mistyped as not having DQ8 when she had DQ8 after all, and some half genes are around too. Also, some DQ2,2 have been posting here. Most of these with other genes have a hard time getting diagnosed, but some do get a diagnosis. All in all, you cannot use the gene...
  15. nora-n
    okay you ordered AGA IgA, antigliadin IgA and total IgA?
  16. nora-n
    no theya re in the blood and one ahs toe at gluten for three days, then draw blood and they find the freshly activated T cells in the blood. Does not work if one is still eating gluten.
  17. nora-n
    The reason one gets such huge responses to just traces of gluten after going gluten-free is freshly activated T cells. They are researching this response now several places to try to make a new celiac test. One must be gluten-free for at least a week to get this freahly activated T cell response. I tried to enroll in such a study.
  18. nora-n
    Read Dr. Ford's view on antigliadin IgG. It can be early stages fo celiac, or gluten sensitivity where other parts of the body are more affected than the gut. In my case, the gluten gets to my brain.
  19. nora-n
    If you google ford gluten you get Dr. Ford´s homepage andsomewhere there is info about the signig´ficance of the antigliadin IgG test. He really thinks it means something but not neccessarily old-fasioned celiac. Some people have constipation as their mein celiac symptom, and you can still be gluten sensitive or celiac or something, and the doctor may h...
  20. nora-n
    The most common celiac test is the ttg test, tissue transglutaminase 2. Soemtimes they call it endomysium antibody test but it is actually the ttg test. Lately I have seen they call the new and maybe more accurate deamidated gliadin test for antigliadin test. Which tests were available? The old antigliadin antibody test is only able to pick up about...
  21. nora-n
    marz, the antibodies might have gone down a bit from the gluten free experiment. Hard to say, everybody is different. IgG type antibodies hang around much longer so maybe you can talk them into running both due to the going gluten free experiment....maybe. The IgG antibodies can hang around for up to a year after going gluten-free, and we have seen that...
  22. nora-n
    If you have been gluten free for a week, then you get what is known as freshly activated T cells when trying gluten again. They are even developing a new test that works just like that, either be gluten-free or go gluten-free and then test for freshøy activated T cells in the blood. Only celiacs get them.
  23. nora-n
    You say the blood tests were a year old. Now typically the antigiadin test is the first one to turn positive, then the ttg test. So in theory, the antigliadin test might have gotten higher by now and the ttg might have turned positive . I mean until you went gluten free.
  24. nora-n
    Yes exactly, it is really confusing that enterolab reports the results in the old format, especially since a new format has been used for a while. Yes, DQ2,2 which lacks the 05* alpha chain, and is only connected to celiac in a lesser degree, together with DQ7,5, actually forms DQ2,5 by trans. But we have noticed that some DQ2,2 only , without the DQ...
  25. nora-n
    I flew Delta/KLM from Amsterdam to the U.S. and back in april, and the gluten free meal was booked together with the ticket, but there was none when the meals were brought out. I ate the chicken meal minus the rice which had cheese in it, and did not get sick (and I am very sensitive) so maybe they scrapped the glute free meal because one of their dishes...
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