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nora-n

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Everything posted by nora-n

  1. nora-n
    Subtype 2,5 can also mean DQ2 with beta 0201 and alpha 0501 (check the charts) as opposed to 2,2 who are 0202 in beta and 0201 in the alpha chain. 2,3 have 0302 in the alpha chain. Lately they have written the DQ types like that, but Enterolab has not caught up yet as far as I know. 0301 often have 05* alpha and that means it is half a DQ7,5 and is...
  2. nora-n
    greenpear, Enterolab did not rip you off, since the test actually was invented and developed to find microscopic colitis, which responds to gluten and gets better on a gluten free diet but some do need other medicines. So it turned out you have microscopic colitis, and this is what the test was about.... He discovered the test also was useful to catch...
  3. nora-n
    There is some new research now into positive ttg antibodies and negative biopsies, and they did find the people that went gltuen free did improve. Nowadays a lot of celiacs are diagnosed without any symptoms, that is because they now test close blood relatives of diagnosed celiacs. Often they ahve severe villi damage but no symptoms. Old an young....
  4. nora-n
    I and someone else also noticed more reactions to small gluten sources than to huge gluten sources. Happens sometimes.
  5. nora-n
    The 0301 means DQ7, and many DQ7 have the 05* alpha chain, menaing they have half a DQ2. There have been several of them here (some DQ7 by enterolab, and one that was half gene positive by Prometheus or some other lab that tests alpha chains) Many mainstream labs now test both beta and alpha chains, so you need to get that tested if you want to know....
  6. nora-n
    There are IgG versions of all celiac tests except the EMA test! Actually, lots of celiacs are IgA deficient, and they even recommend testing IgA deficient patients for celiac for that reason. I forgot where I red that, maybe here some years ago. With the general population, IgA deficiency is rare, but it is not uncommon with celiacs. Still, 20% of...
  7. nora-n
    mari, 0302 is DQ8, the other main celiac gene, and 06* is DQ6 which is a subtype of DQ1. Check the charts at the HLA DQ page on wikipedia.
  8. nora-n
    That high fecal fat score means you have a lot of villi damage. The Enterolab tests do not count much with ordinary doctors and are only designed to be so sensitive that they pick up early gluten and other issues. ttg is a marker of gut damage and if you are gluten free the damage of course is reversing so that the ttg levels go down. Being off...
  9. nora-n
    first the antigliadin gets positive, then when there is enough gut damage the ttg turns positive, and that should take a while back on gluten. ttg is connected with lots of gut damage. I wonder if it is worth it, and necessary, since the kid already has a diagnosis.
  10. nora-n
    Skylark, about the references about negative blood tests, I have seen it several places, amongst them in one of the articles in The Lancet online full version that spelled it out. Here at celaic.com there was an article where some scientists wanted to check how the celiac blood tests performed in real life. They split up blood samples from biopsy diagnosed...
  11. nora-n
    The old wheat starch many years ago had 200 or more ppm, so they did find some damage according to the canadian celiac society webpage. I believe tehre is another study showing damage from wheat starch, I will have to mail someone privately to get that one. me, I get DH and I throw up from wheat starch, but I do not try it often. Several people on...
  12. nora-n
    skylark, I am not cranky today, and my back does not hurt, and I have been in the garden doing some gardening, and managed to get the flowers planted in the pots (urns) that are supposed to sit around the porch here. Nice. Thank you for your answer. What science do you do? Lundin is the expert connected with the norwegian celiac society and he says...
  13. nora-n
    Skylark I hear you, but I speak for myself I am double DQ5 and they actually use the gene test for DQ2 and DQ8 to absolutely exclude a celiac diagnosis for the likes of me. I even have DH, and my migraines stopped after stopping gluten, and I had to double thyroid hormones because of malabsorption, and then go back on the original thyroid hormone dose...
  14. nora-n
    The IgA is a total IgA, and they have to run that one just to check if the IgA type tests are valid. Celaics have more frequently low total IgA and then the IgG type tests must be done instead, as the IgA type tests are not valid. Here they called the tissue transglutaminase tests for endomysium antibody, but the EMA does not have a IgG test. The EMA...
  15. nora-n
    Here is one article that says DQ7 (beta 0301 and 0304) and DQ5 (beta 0501) have been found in celiacs: Open Original Shared Link note the conclusion is different from what we read out of the article......researchers probably are not allowed to publish they found other genes in celiacs. another thread about non-typical genes and celiac yes, I...
  16. nora-n
    DQ9 is common in Japan, and DQ2 uncommon. Now DQ9 differs from DQ8 by just one base I think and therefore can present gliadin kinda like DQ2 or DQ8 can. Even DQ7 is a celiac gene in Sicily, and there is research on that too, and how it does it structure-wise. About gliadin, this is very important re. neuro issues with gluten, just google hadjivassiliou...
  17. nora-n
    We have a celiac home test here, and it is the IgA type ttg test. So if the total IgA is low, it will be negative. Someone on the forum in our country tested slightly positive (with lots of symptoms) and the hospital test was negative, so we know it is a bit more sensitive than the hospital test (different cutoffs probably) The producer of the test...
  18. nora-n
    another possibility could be lyme disease, I read on,lymenet or another lyme forum that some have that. (lump on neck) And, many many lyme patients develop gluten intolerance, which is as bad as celiac except for that the blood tests are weakly positive and the biopsy negative. It usually resolves with successful treatment for lyme.
  19. nora-n
    I heard Iceland is okay at gluten free, but celiac is less known than in the rest of scandinavia.
  20. nora-n
    Because of the new EU laws regarding gluten free, even wheat starch has to be below 20ppm soon. Here in Scandinavia all producers have already made the change, but they have not updated the packaging quite yet. The old wheat starch typically had up to 80-100ppm in northern Europe. I just came back from Poland today, but I only looked into one supermarket...
  21. nora-n
    I am going to poland soon, thanks for the warning about the wheat starch. There is a minority of celiacs who do not tolerate the codex wheat starch either. I have not tried the new beow 20 ppm wheat starch yet so I do not know if I react, but I would think so. I printed out the word list. I guess they list wheat starch? It was not listed on the allergy...
  22. nora-n
    I was wondering what Prometheus meant with *02 and half the heterodimer. The whole Dq2,5 celiac hete3rodimer is 0201 in the beta chain and 0501 in the alpha chain. But there are several different DQ2 types, and some get mistyped as other types while they are a different kind of DQ2. There is 2,2 which is beta 0202 and alpha 0201 see the charts...
  23. nora-n
    mkmom, over at the delphi celiac forum there is one mother who hasa high funtioning autistic son, and has written a book about the Gluten-free Casein-free diet, and another mother has a daughter with problems with gltuen like that, and others have meltdown issues if the kids have some gluten, but not when they are off gluten. Maybe go over there and as...
  24. nora-n
    The other celiac tests, what tests were done?? The DQ2 gene is the main celiac gene, and most celiacs have that. The mouth ulcer thing is also typical for celiac. Have you considered going strictly Gluten-free Casein-free with him? The diabetes 1 was probably triggered by gluten anyway. In addition,autists have this leaky gut thing that causes...
  25. nora-n
    okay, but the immune response from glutening lasts longer, up to four months. That said, you are fortunate to have lots of symtoms from glutening, as the hidden dammage is worse. Lots and lots of celiacs cheat and many of them only have slight or no outward symptoms but the immune system gets triggered (Tcells etc) and many celiacs have other autoimmune...
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