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RMJ

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by RMJ

  1. RMJ
    It will not undo all of the healing. If it did, diagnosis of celiac disease would be much easier! To have enough damage to see on an endoscopy requires several weeks of gluten ingestion.
  2. RMJ
    I’ve had on and off swelling of a salivary gland below my jaw - sialoadenitis. It was very visible when it swelled though.
  3. RMJ
    I have long hair and tend to get it in my mouth so I make sure there are no gluten ingredients in my shampoo. I don’t worry about something that just goes on my skin, away from my mouth.
  4. RMJ
    I noticed that you said you eat oats. Are they labeled gluten free? Oats are often contaminated with wheat if special care isn’t taken. Also, some with celiac disease react even to gluten free oats.
  5. RMJ
    I am a sensitive celiac and would not hesitate to take it.
  6. RMJ
    To manufacture polysorbate 80 requires multiple chemical reaction steps. Even if one of the chemicals used to make it was derived from wheat, it would be highly unlikely that any gluten would still be there at the end. Plus it is a partway down on the list of inactive ingredients in omeprazole, so there won’t be a huge amount of polysorbate 80 in each p...
  7. RMJ
    That is a test for total IgA, it is not a test for the IgAs related to celiac disease. As Trents said, since it is a bit low, the celiac IgA tests may give falsely low results.
  8. RMJ
    With the range and units it does not make any sense for that test to be for Tissue transglutaminase IgA. That normal range would be very logical for total IgA. Please ask your GP when you see him/her.
  9. RMJ
    Based on the normal range and units, that looks like a test for total IgA, not a celiac specific test. Were any other tests run?
  10. RMJ
    Some certified gluten free foods are made on shared equipment. presumably they have excellent cleaning procedures that have been tested. So safety for celiacs is really going to vary from one manufacturer to another,
  11. RMJ
    Do you have the actual biopsy results (pathology report) or just the statement that biopsies were negative? You may want to ask for the actual report to see if it shows any MILD signs of celiac disease.
  12. RMJ
    For my biopsy the pathologist didn’t indicate a Marsh scale, but my gastroenterologist was able to say what it was based on the biopsy results. It is typically recommended to take six biopsies to find celiac disease. I think that is just to have less chance of missing it. Damage can be patchy, and only one biopsy has to show celiac damage to say y...
  13. RMJ
    Be sure to eat plenty of gluten between now and your gastroscopy. Stopping gluten too soon can lead to false negative results. Plus, in case you do have celiac disease, you might want to eat all of your favorite gluten-full foods while you can!
  14. RMJ
    Celiac associations have some directories of physicians: National Celiac Association Pediatrics directory Celiac Disease Foundation searchable directory
  15. RMJ
    The antibody tests used to diagnose celiac disease are NOT approved by the FDA to evaluate healing on a gluten free diet after diagnosis, although they are widely used that way. Here is a scientific paper that shows that the antibody tests don’t do a great job detecting villous atrophy on a gluten free diet. Tests for Serum Transglutaminase and Endomysial A...
  16. RMJ
    Many doctors don’t even do routine followup endoscopies any more. Was yours a routine followup or due to continuing symptoms? I agree that full healing of villi and thus absorption of nutrients would be ideal. The term “blunted villi” doesn’t say how blunted, so unless the pathology report said something about villous height to crypt depth ratio (...
  17. RMJ
    I only had the one endoscopy. My GI wasn’t worried that I still had blunted villi. My antibody levels are now normal. I never had specific symptoms, although I generally feel better now, less fatigue. I think not having excess lymphocytes any more would be an improvement. Since you still have symptoms I hope your doctors will still look for a...
  18. RMJ
    I don’t know what sort of labeling TJs does for gluten free. In general, if a company labels some products gluten free, then has a product not labeled gluten free, I would be very cautious with that product.
  19. RMJ
    Four years after I started my gluten free diet I still had “focal mild villous blunting.” One of the four antibodies tested was also still a little high (all four had been high at first). Unfortunately, I wasn’t able to have a biopsy prior to going gluten free so don’t know if the blunting was an improvement or not. Did you have a biopsy when diagnos...
  20. RMJ
    I hope your procedure was successful and that you get a definitive answer from the biopsies.
  21. RMJ
    If you’re baking, the King Arthur gliten free flours are enriched with some B vitamins
  22. RMJ
    What organization certifies them? I didn’t see a logo.
  23. RMJ
    Another good indicator for celiac disease without getting a biopsy would be if your antibody levels go down after you’ve been strictly gluten free for 6-12 months.
  24. RMJ
    However, I don’t think the FDA regulation applies to supplements? (At least the original rule didn’t). Perhaps the manufacturer considers Kachava to be a supplement not a food? It looks like their label says “Supplement Facts” not “Nutrition Facts.”
  25. RMJ
    In the US if there is less than 20ppm or less than 10 ppm gluten, food containing barley still canNOT be labeled gluten free, or no gluten or any such synonym UNLESS the grain has been processed to remove gluten and that is stated on the labeling. Just using a tiny amount so the overall product meets the 20 ppm standard is not acceptable. See questions...
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