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nora-n

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Everything posted by nora-n

  1. nora-n
    Hi Tidings, I do react to glucose from wheat, even though it may test as gluten free, and maltodextrin, even though it is made from supposedly purified starch. The swedes have tested glucose form wheat starch, and foudn various concentrations of gluten in it , down to no detection. (maltodextrin is made from starch plus citric acid and I react to citric...
  2. nora-n
    Hi, I think there are several vegetarian gluten free food blogs out there. Just that I do not remember where. Anyone have any links? Open Original Shared Link Open Original Shared Link
  3. nora-n
    Here in europe they oficially say celiacs cannot work in a bakery with gluten. I used to bake once a week or so at home, and I had to give it up (baking for other family members who tolerate gluten) as I get DH from inhaling, even when being very very careful with the flour.
  4. nora-n
    I just checked the lovetoknow website someone linked to in this thread, and it is very inaccurate. Maltodextrin is not naturally derived from barley (they assume it is made from malt, which is not true) Gluten is not in other grains, like teff, as the name rules have changed several decades ago, and they perpetuate inaccuracies. What was formerly called...
  5. nora-n
    Hi, about your gene test: Enterolab uses the old names, DQ2 and DQ2 and puts a comma between them. Actually, your DQ genes are: DQ2,2 with the 0202 beta chain, there have been several people here with lots of symptoms with 0202. DQ2,5 with the 0201 beta chain, and this is the main celiac gene. I think you just did not eat enough gluten for the tests...
  6. nora-n
    Maltodextrin is not made from malt, but from starch plus citric acid. Just look it up in wikipedia. Then look up citric acid. It is made from mold. I have high IgG antibodies to yeast and react to mold, also I react to traces of gluten. Citric acid may be derived from moldy wheat or any starch. Anyway, my butt hurts from some citric acid, and not...
  7. nora-n
    Hi, DQ8 is not just moderate risk, it is the other one of the main celiac genes. The mild villous blunting sounds like celiac.
  8. nora-n
    Sometimes epilepsy is just caused by gluten, by the way. Can you list all the tests you had? Please?
  9. nora-n
    Lots of labs in Germany have 2,5 as the upper range, and 3,0 is the upper end of the normal range many places in the U.S. If you go to a doctor who is a D.O, doctor of osteopathy, they look at the whole picture and decide if you have typical hypos symptoms all in all, and then they can start you on Armour or synthroid. Definitely a TSH of 4,4 is way high...
  10. nora-n
    That is the other main celiac gene, HLA DQ8, and the not-so -often celiac prone gene HLA DQ 2,2. (beta chain is 0202) The main celiac gene is beta 0201 and is nowadays called HLA DQ2,5 since the alpha chain is 0501.
  11. nora-n
    These tests listed are only positive if there has been cell damage, they are not ordinary antibody tests for gliadin (which is a part of gluten) Print out these: Open Original Shared Link Open Original Shared Link
  12. nora-n
    they set the reference range so high so they supposedly get no negative biopsies if the ttg test is positive..... There was an article here in celiac.com where real blood samples from biopsy proven celiacs were sent to several actual labs. Some found most of them, (80% I think) some only found 50% of them
  13. nora-n
    They use the blood tests to monitor celiacs on the gluten free diet, so obviously what she said is nonsense. They should go down to 0. Now the ttg test is special, since it is dependent on actual tissue damage. Damaged cells cause ttg. On the gluten free diet, there is no mroe cell damage. Also, one needs to eat a lot of gluten to be positive, but some...
  14. nora-n
    Officially, 20% of biopsy-proven celiacs with villous atropy have negative bloodwork, and partial villous atrophy, patchy celiac, about half are negative.
  15. nora-n
    If they would make the injera from teff like the original recipe, it would be fantastic. Ethiopian food used to be gluten free ages ago, and casein free I think too. I have had teff injera made by a friend from somalia. Distinct sourdough taste, tasty.
  16. nora-n
    Of course yor blood tests are negative when you are on the gluten free diet. Your doctor should have pointed that out for you.
  17. nora-n
    These two tests are considered the most specifi tests for celiac nowadays, but recently the new deamidated gliadin test has been introduced several places and it is considered a bit better than the ttg test. The endomysium test is the most specific one for celiac. Note there are lots of false negatives, and the cutoffs are set very high as the doctor...
  18. nora-n
    re. autism spectrum including asbergers, there is also a different mechanism by which gluten affects them. It is tiny particles of gliadin that work like morphine in their brain. This has nothing to do with celiac and celaic tests do not work to detect those gliadin fragments. Google reichelt gliadin.
  19. nora-n
    If you check out on wikipedia, there are several HLA DQ pages, and 2,2 is definitely a litte bit connected to celiac. Also, we have had several DQ2,2 posting here with symptoms and questions.
  20. nora-n
    Actually, a few experts have banded together and formed some loose association or whatever on the topic of gluten sensitivity. I think it is this site: Open Original Shared Link Open Original Shared Link and some doctors have their own websites, like Dr. Ford, Dr. Lewey, and some others have other websites: Open Original Shared Link and there should...
  21. nora-n
    I do not know where my feet are, if I get glutened sometimes. There are even a couple of forums for those with neurological issues from gluten, go to braintalk and scroll down to gluten sensitivity, and neurotalk, same thing. They have stored a lot of useful links from medical papers. It might help you talk to doctors. It might help the cause of more...
  22. nora-n
    Aboout what to tell the children: It is not so simple, or straight-forward. Well, one must explain it is just about risk. Not celiac genes, just risk. As of now, the HLA DQ genes (which only contribute to celiac with about 40% anyway) which are most often found in celaics are HLA DQ2 and HLA DQ8. DQ2 is 0501 0201 or trans by combining DQ2,2-02...
  23. nora-n
    They know about many more genes conributing to celiac, and HLA DQ is now only regarded to contribute to celiac risk with 40%. The greatest risk is still having a sibling or close blood relative with celiac.
  24. nora-n
    I think doctors should be highly suspic
  25. nora-n
    Note that the EMA test is only IgA, since this is not an automated test. they take a piece of monkey esophagus and incubate with the blood test, and look in an electronic microscope for flourescence which is caused by IgA. There is no IgG version of that test. Sometimes medical papers mention endomysium IgA and IgG, but obviously they then mean the ttg...
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