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nvsmom

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Everything posted by nvsmom

  1. nvsmom
    Celiac specialists, like Dr Fasano, still state that non-celiac gluten sensitivity (NCGS) is very real and horrible problem. As far as I can tell, those with NCGS have symptoms every bit as terrible as a celiac, and quite often I think they feel worse than me. NCGS is real and the need to stay gluten-free is just as strong as for a celiac. If you eat gluten...
  2. nvsmom
    Dr Fasano, a leading researcher of celiac disease, states that there should be 4 out the following 5 criteria met to get a celiac disease disgnosis: Celiac symptoms (there are over 300) positive blood tests: tissue transglutaminase (tTG IgA, tTG IgG), deminated gliadin peptides (DGP IgA and DGP IgG), endomysial antibodies (EMA IgA), total serum immunoglobulin...
  3. nvsmom
    It should be fine. The one test to check to make sure a celiac test is accurate is the immunoglobulin A (IgA) test. About 1 in 20 celiacs is deficient in IgA which will cause false negative celiac disease tests. Welcome to the board.
  4. nvsmom
    I too was diagnosed without a biopsy. It is becoming much more common, especially for those with two or more positive tests (when there really is no question that it is celiac disease). I like to compare celiac disease testing to pregnancy testing. The ultrasound isn't usually needed when you have three positive tests lined up in front of you, but if...
  5. nvsmom
    It IS hard at times. Just give yourself a few extra minutes when shopping, to read labels, and you'll do fine.
  6. nvsmom
    Most product are. I tend to avoid some like Aveeno (sp?) that has oatmeal, but most are fine. just bring a magnifying glass to the store to read the teeny tiny labels.
  7. nvsmom
    Welcome to the board. Wow. She has more positive tests, and with higher results, than most adults get. That is definitely celiac disease. The GI doc will probably want to biopsy her, if so make sure at least 6 samples are taken because up to 1 in 5 celiacs has a false negative biopsy which many find very confusing. With three types of positive tests...
  8. nvsmom
    Whine away. We've all done it. It takes a (long) time to find the safe brands but once you do, life gets easier.
  9. nvsmom
    Yep. No cross reactivity. None of those foods will cause and autoimmune celiac reaction, well, except the wheat. That's not to say that some people do not have intolerances to some of those foods. A food sensitivity can make you feel awful, but it's not a celiac disease reaction. Best wishes.
  10. nvsmom
    Welcome to the board, Rob. That's a shame that doctors did not connect the dots for you years ago. Liver disease is not uncommon among celiacs... they really dropped the ball there. Chronic liver disease can actually cause a false positive tissue transglutaminase test (tTG IgA or tTG IgG) ... they really should have caught that. Glad you...
  11. nvsmom
    Your GI may be incorrect. The tissue transglutaminase (tTG IGA) test can remain positive in some celiacs for many months after going gluten-free, especially if they have other health issues like thyroiditis, but in many others, their tTG IgA returns to normal within weeks of going gluten-free. Are you planning on staying very strictly gluten-free in...
  12. nvsmom
    I use Sevia in some things and haven't had a problem. We're all different though.
  13. nvsmom
    You might want to get tested before going gluten-free any longer. Celiac tests will become negative after a time on the gluten-free diet, including for all celiacs. If you choose to test in future, after being gluten-free for some time, you will need to resume eating gluten for two to three months, and not all celiacs are willing to feel badly, for so long...
  14. nvsmom
    Sorry for your loss. I agree that the small glutening didn't cause this. It was probably not meant to be .... Doesn't make it any easier though.
  15. nvsmom
    Again, poor kid. With the DGP IgA, DGP IgG, and EMA IgA, I just meant to run those to check for gluten-free compliance. If gluten is the problem, and sneaking into his diet somehow, these tests are more likely to be elevated, unlike the tTG IgA which can sometimes remain elevated for years after going gluten-free or (rarely) because of another health...
  16. nvsmom
    This report is quite good too: Open Original Shared Link
  17. nvsmom
    Poor kid. Has he had the DGP IgA, DGP IgG< or EMA IgA tests done recently? They might be worth checking to see if gluten is the problem. The EMA IgA is usually positive only if the tTG iGA is quite active - only positive when the disease is in it's advanced stages. If he is gluten-free, the EMA IgA will come down before the tTG IGA does. The...
  18. nvsmom
    He could just be slow to have his numbers come down. It is unusual for it to take that long, but it does happen. There were a few people around here who took a few years. After 1 year gluten-free, my number was almost normal, and that was while on steroids which will lower numbers too. I would tighten up on the things you mentioned: no eating out,...
  19. nvsmom
    I was convinced that I had Lupus or some other problem beause my arthralgias took so long to improve on the gluten-free diet. I still (2.5 years later) get flare-ups of joint pain but they are much less than they used to be, and are generally less severe and of shorter duration. Although my pain sounds different than yours (joint rather than muscular) perhaps...
  20. nvsmom
    Celiacs can have normall BM's. Some have D, some have C, and some are perfectly nomal. The same can go for nutrient absorption. I had undiagnosed celiac disease for probably over 35 years. I had C most of the time (I honestly thought it was normal BM's because I had known no other), and my nutrient levels were fine - in fact my B12 was high. Odd BM...
  21. nvsmom
    I responded here: http://www.celiac.co...al/#entry940407
  22. nvsmom
    I think I would go gluten-free too, just to be safe. Autoantibodies tend to linger in the blood stream anyways, so going gluten-free sooner rather than later is a good idea. I've seen 2 or 3 people have a positive EMA IgA with a negative tTG IgA in the past few years on this board. It is not common, but it does happen. That test is VERY specific...
  23. nvsmom
    We're having the opposite experience up here in the west. It has been a really mild winter. It even rained once in January and this morning too - sooooo weird. I hope the snow isn't a real heavy one for you.
  24. nvsmom
    She is cute.
  25. nvsmom
    The thing is that we don't have to eat in that restaurant to live, but then again, neither does someone in the wheelchair.
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