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RMJ

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Everything posted by RMJ

  1. RMJ
    Two weeks may not be enough of a challenge. Figure 2 in this paper: Open Original Shared Link shows a very slight increase in some antibody levels at two weeks but it really took four weeks for the bigger increase. If you're so sick during the challenge it certainly says that your body can't handle gluten.
  2. RMJ
    I was very surprised that my doctor had the biopsy results a few days (I think 2 or 3) after my scope.
  3. RMJ
    I am not saying they should do more tests. They could easily improve their testing using the same number of samples they test now. They test X boxes and end up with X samples. But they mix everything together (from the X boxes) before taking the samples from that mixture. They should instead test the individual samples from the X boxes.
  4. RMJ
    They pool their samples then test multiple samples from the pool. So if one result was high it would be diluted out in the test results. I think this link is available to nonsubscribers to gluten free watchdog: Open Original Shared Link
  5. RMJ
    Thank you Nomi2 for your diligence - I'm very sensitive and would feel safe eating your products! "Wild oats" is a slightly vague description. There is more than one species in the oat genus that may be called a wild oat. Regular oats do not contain gluten. As you said, regular oats may be contaminated due to shared trucks/silos/equipment. There...
  6. RMJ
    If your son's doctor is saying your doctor didn't test you for total IgA, he's thinking in the wrong direction. Low IgA could lead to a false negative result (looking like a negative when it is really positive). Since you already have a positive result the total IgA result isn't really needed.
  7. RMJ
    The issue from my perspective (several decades as a trained scientist) is that their sampling plan for testing the Cheerios is not scientifically sound.
  8. RMJ
    The risk of a non-celiac getting intestinal lymphoma is extremely tiny. The risk of someone with refractory celiac disease is higher (I think maybe double?) but 2 x extremely tiny is still extremely tiny, and an elevated antibody level is not enough to say you have the refractory version. You could have a repeat endoscopy to look for damage. Are you still...
  9. RMJ
    A visible bread crumb is not a small amount to a celiac, it is an amount that can cause severe reactions.
  10. RMJ
    Different doctors test for allergies in different ways, some more scientifically -based than others. Were the same types of tests run 10 years ago and recently? Blood tests looking for allergen-specific IgE or skin prick tests are the most scientifically accepted tests for things like pollen, housedust, molds and pet dander. I used to work in R&D...
  11. RMJ

    ARCHIVED Osteopenia

    RMJ replied to Mshell's topic in Related Issues & Disorders

    Weight bearing exercise is also good for osteopenia.
  12. RMJ
    Nuts.com has some certified gluten free nuts. Open Original Shared Link
  13. RMJ
    I was not able to have a biopsy when I first discovered that my celiac antibodies were high. I decided going gluten free was worth it even without knowing how my villi looked, because I didn't want a bunch of autoimmune (against me!) antibodies in my body. You might try gluten free and see what that does to your antibody levels. Just be aware that the...
  14. RMJ
    It usually takes more than 3 weeks on the gluten free diet for antibody levels to go down to normal. However, if your blood tests come back negative, you may want to do a gluten challenge and retest.
  15. RMJ
    Yes, those are antibody tests. The gliadin, tTg and endomysial should be repeated after she has been gluten free for a while (but DON'T go gluten free until the endoscopy/biopsy has been done). The IgA is a control test. Different laboratories use different ranges so to compare, the repeat tests should be done by the same lab as the original ones. And...
  16. RMJ
    How was she diagnosed? If she had antibody tests, you can repeat those in 6-12 months to see if they return to normal levels. If not, you should be more careful. I had few if any symptoms, but discovered through antibody testing that I am very sensitive to teeny tiny levels of gluten. One of my antibody levels (Dgp IgA) is still a bit above the normal...
  17. RMJ
    There are two doctors involved and they have different recommendations. I had a colonoscopy 10 years ago and took the medication the morning of the procedure, but all the prep was the night before. If I take it one hour before I start the morning prep that will be too far ahead of the procedure, so I'll take it after, whenever I'm allowed to eat.
  18. RMJ
    My GI is doing an endoscopy along with my every-10-year colonoscopy because some of my antibody levels are still elevated. How soon after the endoscopy can I eat? I need to take some medication that day and am trying to decide if I will take it with water an hour before my a.m. colonoscopy prep (divided prep) or after the whole thing is over. The pills...
  19. RMJ
    Tests made by different manufacturers do have different scoring systems. And some people have higher levels of antibodies than others. Kurasz, did your sister's docs just call it a false positive because it was high? It is possible but that interpretation would worry me unless they had other evidence, such as a negative biopsy. I used to work...
  20. RMJ

    ARCHIVED My weekend

    RMJ replied to Galixie's topic in Coping with Celiac Disease

    Oh, it would be more difficult if your doctors don't back you up. Sorry you don't have a definitive diagnosis from a doctor,
  21. RMJ
    I had my first experience last Friday turning down gluten free food made for me by someone I barely know. Yes, it was very, very kind of her, and she went to extra trouble to buy a gluten free Trader Joe's pie crust, but I only eat baked goods that I make or that are made in a dedicated facility. She claimed to know what Celiac disease is. I can't believe...
  22. RMJ

    ARCHIVED My weekend

    RMJ replied to Galixie's topic in Coping with Celiac Disease

    I just say that my being gluten free is from a medical diagnosis, not the fad, and most people are satisfied with that.
  23. RMJ
    I had my first celiac tests done through www.mymedlab.com. They can't operate in all states. In my area they actually use the same lab to perform the tests that lots of local doctors use. I don't know if they have the Dgp test available in all areas.
  24. RMJ
    GFR ranges are very strange. We went through this with my husband. Did you notice in Icelandgirl's link that there is no range that is considered good and normal? I just had mine tested and the report said that normal was > 60. As your report says, your value is only a problem if there is other evidence of kidney damage.
  25. RMJ
    My spine is fine, at least fine for my age (has some expected issues for a 61 year old). Still don't know what is causing the tingling. Oh well. At least it has stopped getting worse.
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