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nora-n

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Everything posted by nora-n

  1. nora-n
    the symptoms of severe constipation are diarrhea it runs past the blockage
  2. nora-n
    rockhard belly is not so uncommon with celiac either, or with casein intolerance. Constant diarrhea is actually a symptom of severe constipation. Casein intolerance and lactose intolerance and celiac for that matter, are not allergies
  3. nora-n
    yes, I have double DQ1, with DH if you google hadjivassiliou, 20% of his gluten ataxia patients had DQ1
  4. nora-n
    There have been several people here officially diagnosed with celiac who had other genes than DQ2 or 8. In fact, only 92% have those genes, 6% have half a gene, and 2% have other genes. And, some are mistyped, they actually have DQ8 (which is harder to type)
  5. nora-n
    Hi, 92% of diagnosed celiacs have DQ2 or 8, the official celiac genes. 6% have half a gene, and 2% have different genes. ---on some other forums for gluten sensitivity, they note that several gluten sensitive patients have HLA DQ1, (which are DQ5 and DQ6) and negative biopsies, but they are more sensitive to gluten than ordinary celiacs. On DQ1...
  6. nora-n
    I have read a report from someone who saw Dr. Greene and basically he took a sample of the small intestine and incubated it with gluten to check if it made celiac antibodies. (this was someone previously diagnosed with celiac, but who had experienced problems despite of a gluten free diet. They wanted to check if the patient really was celiac because only...
  7. nora-n
    celiac is genetic, and she got the genes from you. Often nowadays doctors will rule in celiac when there is doubt, after a positive gene test.
  8. nora-n
    What genes do you actually have? There have been several DQ2,2 celiacs here, and a few with half a DQ2,5 gene. Also, there were some DQ6 officially diagnosed celiacs. Your biopsy report and blood test look very much like celiac, considering you went off gluten for four weeks prior to the testing. The one week back on gluten is not enough to bring back...
  9. nora-n
    Lyme patients need to be gluten free anyway, so I guess you need to be glutenfree anyway. Yes, wheat germ from a pill could be too much gluten for you. But in Europe where some countries have wheat starch, the recommendation si to consume no more than 50 mg gluten a day from wheat starch. Some tolerate way less.
  10. nora-n
    You have DQ6 and DQ2,2 (there have been quite a number of DQ2,2 people here with celiac symptoms, and some have been diagnosed I guess too) The 01 in the alpha belongs to the 06 in the beta, and is DQ6. DQ6 is a subtype of DQ1 (the other one is DQ5) The 02 in alpha belongs to the 0202 in the beta chain There is no DQ7 here since they are looking...
  11. nora-n
    your total IgA is lowish, and the IgA based tests of course require presence of IgA. So your IgA type tests really are a bit higher. I see you have not 0 on any of the tests. Worth a biopsy anyway (with several specimens)
  12. nora-n
    yes, the DGP IgG is the most specific test around, after the EMA test.
  13. nora-n
    sometimes they call the tissue transglutamiase test for EMA (maybe because several years ago the EMA was more known than the then new Ttg test) I have seen that sometimes
  14. nora-n
    ok, but I have not seen anyone reporting of having had thenEMA IgG done, and someone posted here some years ago there is no EMA IgG, just IgA so I thought so it was
  15. nora-n
    they should have done the total IgA too I am in Europe too, and they usually only do one test, the Ttg IgA or the deaminated gliadin tests, I do not know if they only do the IgG version of that one. With the ttg IgA test most labs also do the total IgA I know many places they do the endoscopy even with negative blood tests.
  16. nora-n
    there is no EMA-IgG. The endomysium test isa manual test where they look for IgA deposits under an electron microscope
  17. nora-n
    I sent mine from Europe, and yes it is expensive but doable
  18. nora-n
    By the way, if you are IgA deficient, the Enterolab tests will not work either...(those are some very sensitive tests for gluten intolerance, not celiac, and were developed for testing if patients with microscopic colitis were better off going gluten free)
  19. nora-n
    It is called a gluten challenge, and maybe you can google it. You have to eat a lot of gluten for several weeks, best three months or so, but it is individual when the tests turn positive. maybe just take a blood test now to see what it says? It will probably be negative. But it is good to have this baseline before testing. But, do you NEED a diagnosis...
  20. nora-n
    ttg-3 is tissue transglutaminase 3 for example. The one for gut celiac is tissue transglutaminase 2. I have not run across Lichen Planus. But another thing related to gluten is HS, Hidradenitis Herpetiformis and doctors do not know about the connection. So lots of things are gluten related, like sometimes pancreatitis and migraines
  21. nora-n
    Hi, there actually is a diet without grains the Specific carbohydrate diet. There are also some variations to that one as well, like gaps and low oxalate diet.
  22. nora-n
    those with neuro issues from gluten, have ttg-6 antibodies, DH have ttg-3 antibodies (but we do not get those tests) Hadjivassiliou found that gluten ataxia patients often have antigliadin antibodies. Now when they often have phased out AGA testing, those with neuro issues and AGA will have the more specific tests for celiac in the gut, and miss celiac...
  23. nora-n
    Yes this is what is called HLA DQ2. The other celiac gene is HLA DQ8. Newer testing methods have shown more detailed gene results, and the alpha chain is the ,5 for example in DQ2,5. It means the beta chain is 0201 and the alpha chain is 0501. DQ2 and 8 are just nicknames, and most people find it easier to remember these instead of beta 0201 alpha ...
  24. nora-n
    recent research has shown that in allt he countries around the mediterranean, they have just as much celiac as here in Europe or the U.S. And in northern Africa they even have found even more celiac, like 7% or so when testing everyone in a refugee camp....so celiac experts are very concerned about what refugees are given when the west sends supplies,...
  25. nora-n
    I think you just have DQ2,5 by trans and a DQ7,5. Not a DQ8. This is most likely made up by DQ2,2 and a 05* alpha chain, often the alpha chain in DQ7,5. I do not think there is greater risk for celiac than just having one DQ2,5. I think the lab answer regarding risks was a standard answer they give when there are two celiac genes, and one of them...
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