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nora-n

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Latest Celiac Disease News & Research:

Everything posted by nora-n

  1. nora-n
    that is a new very specific test for celiac, and it is more specific than the other tests. so it does not matter if they were low or negative.
  2. nora-n
    The DQ2 and DQ8 genes are said to respnosible for only about 40% of the risk for celiac, so other genes like myo9b and others carry more risk. The greatest risk is having a relative with celiac. I have DQ5 and DH, and one does not need the celiac genes for DH
  3. nora-n
    yes, get the total IgA done, and shame on the doctors or lab for not doing that one. And, yes, ask if this was the new deamidated gliadin test. Several places just list them as gliadin Ab nowadays so one needs to ask. In case of low or lowish total IgA, they always run the IgG versions of tests instead. In any case, the high test is suspicious.
  4. nora-n
    if you were gluten free for a month and then back on gluten for one week, then you most likely have healed enough for the biopsy to be negative when they look at it through the microscope. It should also be noted with the biopsy specimen that you had been gluten free, for they look for lots of damage. At this stage, the only thing abnormal would be increased...
  5. nora-n
    You know how fast your mouth heals if you happen to bite yourself in the chin? Same with the gut, so three weeks off gluten can do a lot of healing so that hte damage is not visible in the microscope anymore. But if they had incubated the sample together with gluten and looked at it, and/or measured ttg in that sample, it would have showed celiac. ...
  6. nora-n
    There are lots of mentions out there that the false negatives for celiac tests are more like 50%. It says so in The Lancet in an article I read too, not just some obscure website. Celiac.com also has an article out on that. Now I have seen some new research that looked at the way they do endoscopies, and the places in the U.S. where they only look...
  7. nora-n
    DQ2,2 plus DQ7,5 actually register in gene tests as DQ2,5 since it is DQ2,5 in trans. (but probably Enterolab testing will only give the DQ2,2 result with DQ2,5 in trans since they send their tests to the American Red Cross and only order the beta chain to conserve costs)
  8. nora-n
    The dutch gene tested a lot of diagnosed celiacs, and only 92% had the genes! Open Original Shared Link here they had DQ2,2 To ravenwodglass: there is even a DQ2,9 or DQ2,3 or whatdoyoucallit, it has 02*in the alpha chain and 0303 in the beta chain they never tested your alpha chain as far as I know since those tests were not available back then
  9. nora-n
    Yes, they only go to the beginning of the small intestine. (duodenum) It is possible to see all the small intestine with a video capsule, a pill cam. Celiac is clearly visible with a pill cam. Some celiacs have villi damage other places than at the beginning of the small intestine. Open Original Shared Link
  10. nora-n
    Severe constipation, nerve pain, adrenal issues, hypothyroidism all are typical presentations of celiac too. The list is even longer.
  11. nora-n
    If they would have taken the new very spicific deaminated gliadin test, they would have been more sure....but they still use the old almost-specific ttg IgA and ttg-IgG tests. Mayo is not so famous for celiac and thyroid.... you must know that IgG antibdies take up to a year to go down. IgA type antibodies go down quicker. What was your total IgA...
  12. nora-n
    my blood tests were negative too, but I do not have the main genes and then the tests usually do not work because they are just for gut damage, not the rest of the damage to the rest of the body. I have DH (skin version of celiac) and gluten ataxia too. I got the gene test from enterolab (sent it from Europe and that cost more than the test itself) and...
  13. nora-n
    I do all the cooking here. I used to bake for husband, and continue to bake after going gluten free (not so often, but a few times a month) My entire body felt itchy (I have DH too) and I had to stop baking. I thought I was really really careful about floating flour. Never kneaded the dough, just poured it into pans. did not matter. Too much...
  14. nora-n
    You are DQ1 (DQ6 and DQ5 are subtypes of DQ1) and some DQ1 can be very sensitive to gluten. Usually they test negative for celiac. I can only remember one person here being DQ6 and officially celiac (several others were obviously symptomatic, and got better off gluten, but had negative tests, and there are two or more forums out there about gluten...
  15. nora-n
    Maybe the doctor was concerned and thought you might have this type of persistent celiac, where the gut does not heal despite of going gluten free. Steroids are known to help with this condition. If you truly have refractory celiac disease, this is dangerous and it should maybe be treated with steroids or something else.
  16. nora-n
    now it looks like the deaminated gliadin test can pick up early celiac, or patchy celiac. The old ttg test is not so good at picking up patchy celiac. The newest endoscopy method is the pill cam, and it finds patchy celiac, while the old-fashioned biopsy method easily can miss the patches. (the most common form of celiac is patchy celiac)
  17. nora-n
    all those ttg tests are designed to only be positive with a lot of gut damage, so you need to keep eating gluten as the gut heals very quickly. Like the inside of your mouth.
  18. nora-n
    maybe this is about pancreatic enzymes? Someone?
  19. nora-n
    I was eating low-carb and without any gluten by accident, and discovered that I reacted very much when christmas came or a funeral when i ate some cake. I think that would be aother way to find out if one is gluten intolerant. But I had had the celiac blood tests before. (negative) In general, I recommend getting the blood tests before trying the...
  20. nora-n
    if you google the videocapsule and maybe include celiac in the query, there are some newish articles about the subject. This is quite new.
  21. nora-n
    I do not understand the difference between category 1 and 3 in this list
  22. nora-n
    in the other threads here the patients contacted the lab directly. But I do not know if Prometheus tests for the other genes, and the alpha chains, i do not know. There is a rapid test kit that only says positive or negative for DQ2 or 8, maybe they use that one, maybe not.
  23. nora-n
    the deaminated gliadin test is the latest and best test for celiac, and a bit more specific than the ttg test (which may be elevated because of other tissue damage) Now I do not know what else could cause elevated deaminated gliadin tests other than celiac. Now you are anemic, so there must be a lot of gut damage, but the biopsy must have missed the...
  24. nora-n
    I ahve seen others getting their other genes from other labs, and some have phoned or contacted the lab and gotten the rest of the genes. If you cannot get the results, you can order the gene test from enterolab, they send it to the American Red Cross, but keep the costs down by only ordering the beta chains. With DQ2,2 the alpha chain of the other...
  25. nora-n
    I have heard of cases with bacteria overgrowth where the biopsy was falsely positive for celiac and the blood test was negative, but symptoms and blood test positive and biopsy negative just means that they missed the area, switched samples or someone misread the biopsy. Many have gotten ahold of the biopsy report, and it did say blunted villi or increased...
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