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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
    g/L, a weight per volume unit, would be a very unusual unit for a celiac specific (EMA) test. 1.24 g/L would be in the normal range if this was a TOTAL IgA test. Best to ask the doctor.
  2. RMJ
    Have you considered eating plenty of gluten from now until your capsule endoscopy? If you truly have celiac disease that would increase the chances of damage being seen.
  3. RMJ
    Vitamin K is also thought to help bone health, although not all scientific studies agree.
  4. RMJ
    I’ve been taking oral alendronate for 4 years. I haven’t had any doctors be concerned about it. My dentist recommended against the related iv medications because of potential adverse effects on the bones in the jaw - osteonecrosis. Supposedly rare side effect but he had seen it several times. I originally had the same concern as @trents - slowing res...
  5. RMJ
    I love to bake and have discovered that the brand of gluten free flour used can make a big difference in the result. I find that the recipes developed for a particular brand of flour work best, and a lot of the companies that produce gluten free flours have recipes on their websites.
  6. RMJ
    You can search here for certified gluten free olive oil GFCO productfinder
  7. RMJ
    Most antibody tests for celiac don’t report a zero because of the way the tests work. The lowest reportable value is usually <# (# being the lowest quantifiable value for that particular lab’s test). Values can and should eventually decrease into the normal range. So for the lab used for your son, a 9 would be considered normal. A grain of ...
  8. 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.
  9. RMJ
    I’ve had on and off swelling of a salivary gland below my jaw - sialoadenitis. It was very visible when it swelled though.
  10. 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.
  11. 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.
  12. RMJ
    I am a sensitive celiac and would not hesitate to take it.
  13. 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...
  14. 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.
  15. 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.
  16. 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?
  17. 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,
  18. 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.
  19. 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...
  20. 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!
  21. RMJ
    Celiac associations have some directories of physicians: National Celiac Association Pediatrics directory Celiac Disease Foundation searchable directory
  22. 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...
  23. 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 (...
  24. 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...
  25. 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.
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