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nora-n

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Latest Celiac Disease News & Research:

Everything posted by nora-n

  1. nora-n
    Hi UCD survivor, I was thinking that you maybe could put a thread like this one in the other food intolerances folder, it would fit there and people might look for something like that over there. nora
  2. nora-n
    I collected some non-DQ2 or 8 links here on this slow-moving forum: Open Original Shared Link Note that some researchers did a larger study in europe to see what DQ types they found, and they found celiacs without DQ2 or DQ8, and somehad half a gene. I do not know how enterolab reports those with half a celiac gene. It does look like some fficial...
  3. nora-n
    The best test is a biospy of the duodenum while still on gluten...it may be accurate for a short while after going gluten-free but itis probably individual how long the damage will still be visible . I do not have the main genes (DQ2 or DQ8) and there are many here on the forums who were just as ill but did not show the right kind of villi damage uner...
  4. nora-n
    Last year or so they announcedn that they now had one proven death from the atkins diet....I thought, that this does not prove it is dangerous, as there probably are hundreds of thousands of people out there on atkins..... Intersting that they said there had been six others at that hospital that were severely sick. (I do better on low-carb so i do not...
  5. nora-n
    Hi, I am in Norway too and just had a biopsy for DH and waiting for results. I did not have an outbreak then, as I am gluten-free. I had this typical DH rash with blisters and burning (started in2003) and it went away after ging gluten-free so it must be gluten-related no matter what the results say. I did read the antibodies can be detected for up to...
  6. nora-n
    Many parents with autistic kids use a gluten-free cf diet and see huge improvements. I f you google K L reichelt or Karyn Seroussy or Gluten-free Casein-free , you will find tons of links about that. There is a urine peptide test for them, too. They are not celiac (villi damage) , but the caeins and gliadins are acting like opioids in thier brain. They have...
  7. nora-n
    I think the doctor said he is not celiac because he is not DQ2 or DQ8. But, there are several people on the forums that are DQ1 or DQ7 or DQ9 and celiac. I dug up some references that show they officially found some celiacs that are DQ7 and DQ9 and DQ1. Open Original Shared Link nora
  8. nora-n
    May I suggest you start a new thread with the same title and call it nr 2 and link to this one?? This is because there is so extremely much useful information here and it will get absolutely buried if you continue another year on this thread.....I see the other forums do it that way. There are vitamin D threads ans do on that are very long too. happy...
  9. nora-n
    I had something like that recently and it was just a sensitive stomach and two weeks on ranitidin did the trick. It is probably an over-the counter- medicine. The thing that triggered it was a flu or cold (=stress to the body---increased cortisol in the body= effects on the stomach(they think leucotriens or other substances in the body due to stress and high...
  10. nora-n
    were the tests done off gluten, or gluten-light? Then the tests are not valid. Anyway , the tests are designed to first be positive after severe villi damage is visible on biopsies, because that is what the official definition is, or doctors think so. (it is more a clinical diagnosis, actually) So if they still have moderate villi damage, the tests should...
  11. nora-n
    I was very gluten-light before my tests, so they showed up negative. I had gotten neuro symptoms from gluten and thatn just b chance went low-carb and then noticed lots of diarrea and gas when I ate something with gluten (rarely) so I put two and two together. Had to go back on gluten for the scope and neuro symptoms and DH-like burning rash came back....
  12. nora-n
    I really noticed noticeable symptoms form gluten and milk after starting low-carb. Before, there was no difference after eating gluten. Some have to come off all soy, too. I get really tired from soy, lasts a while and takes a while to go away after going soy-free. What do you eat? Some get bloating and gas from eating all the gluten-free starches because...
  13. nora-n
    If you read around here, tests do not correlate at all with villious atrophy..... Some have weak tests, some negative and some have strong positive tests with villious atrophy. maybe the 4-10 range is the grey zone and you had a very very weak positive and they told you it was negative. It would have been usefult to know so you could have had a biopsy...
  14. nora-n
    On the autism websites they often they cite the work of Karl Ludwig rechelt, who did a lot of work on opioids and gluten/casein. these are protein sequences that have opioid activity is ome people ,like autists. You can google reichelt or Kalle Reichelt or Karl Ludwig reichelt. There is even a test for those opioids. Maybe that is the problem in some people...
  15. nora-n
    DQ7 and DQ5: Now DQ7 is very similar to DQ8, a main celiac gene. There is an article on DQ7 and celiac here: Open Original Shared Link and they found some celiacs who were DQ7. DQ5 is a subtype of DQ1 and several people on the forums with neurological symptoms report they are DQ1 or double DQ1. Dr. Hadjivassiliou writes in several papers that about 2...
  16. nora-n
    All the tests for gluten sensitivity are positive, and milk too. Gene test not finished yet. This is my interpretation. What are your gene results? nora
  17. nora-n
    They just told me I should go to a psychiatrist too, so I can relate. I have these "hives" too that come back when in contact with gluten or baking gluten bread (for others). They do not want to send me to a skin dctor for the suspected DH so I will have to go private. Well, it is only slightly more thatn 100 dollars here but I have to pay for a membership...
  18. nora-n
    Yes, DH=celiac, and here in europe, many places they do not do the antigliadin and endomysila antibody tests any more, just the Ttg test which is very specific for celiac. Your kids'blood test point definitely towards celiac. The negative endomysila antibody tests most likely mean the villi are not totally gone, as it is only supposed to show uppositive...
  19. nora-n
    Here in Europe we would definitely go and get an official diagnosis and he ahs to keep eating gluten until the endoscopy. Often one can get in real quick because of cancellations. My DD2 got immediately better offf gluten like your daughter. She went back on gluten for the biopsies and knew she would get ill again ,but endured. Biopsies were negaive, but...
  20. nora-n
    There are several ways to write DQ types, and one is teh gene and the other the expression (or cake mold and cookie) DW7 is a subgroup of DQ3, and the other DQ types in DQ3 are DQ8, and 9 and 3. DQ5 is a subgroup of DQ1 and is 5 and 6 and 1. 2 is 2,but there are two kinds of 2. 4 is 4. (the beta alleles are: 0501 is DQ5, 0601 is DQ6, 05* is 1, 020...
  21. nora-n
    Here about them finding 4 DQ7 celiacs: "Our data do not support an earlier finding that HLA-DQ7 is a nonsusceptible molecule (2). In fact, DQ7 was present in 50% of our celiac disease patients in the absence of the heterodimer and of the DRB104 alleles. Because the DQ7 molecule is very similar to the DQ8 molecule, it could alternatively present similar gluten...
  22. nora-n
    I was wondering, like, if someone has a chronic infection or a temporary infection, the body hides away iron (because iron is good food for bacteriae or something like that) What would the tests look like for someone like that (and at the same time having hemachromatosis of course)
  23. nora-n
    I read on a forum that someone talked to a cook htat was chinese and he explained that flour there is usually a mix of anything, and there is often more or less wheat flour in it. They do not distinquish so much between different flours in everyday life. They buy flour and it is often just a mix....so it can be hard to live gluten-free when eating out...
  24. nora-n
    Maybe she meant that the result was low positive, just barely positive. This would be positive still. nora
  25. nora-n
    I react toannatto too, but I think it is only because it is a known allergen.
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