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RMJ

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Latest Celiac Disease News & Research:

Everything posted by RMJ

  1. RMJ
    I was wondering the same thing (about cow vs human milk). Cows (ruminants) have a very different digestive system than we do - perhaps they do a better job of breaking down gluten all the way into amino acids.
  2. RMJ
    I have a Withings Pulse O2. It counts steps, elevation changes (stairs and hills), monitors sleep (categorizing as awake, light and deep) and can measure pulse and oxygen saturation. I like it. I try to do 10,000 steps a day. I think it does a good job monitoring sleep (worn on my wrist, like a watch). I don't think the elevation measurements are very...
  3. RMJ
    IgE is related to allergies, not celiac. Here is a page with reference ranges. Be sure to read the part on how to interpret them. Open Original Shared Link
  4. RMJ
    I don't know why you're avoiding a doctor, but in some states (if you're in the US) you can order your own blood tests. I was originally tested through www.mymedlab.com, and I know there are other, similar companies. In my area mymedlab uses a very reputable clinical laboratory. You don't have to share the results with your doctor.
  5. RMJ
    I definitely didn't mean that a little is ok! The size of the tiny crumb that is harmful varies from celiac to celiac but it's always a tiny tiny crumb.
  6. RMJ
    I rarely get symptoms eating gluten - I almost wish I did so I could tell when something I eat is contaminated!. How was your girlfriend diagnosed? If she had blood tests for antibodies she can be retested after trying to be gluten free for 6 months to see if the antibody levels are lower or back to normal (for some people it takes longer than 6 months...
  7. RMJ
    I would ask for a copy of the biopsy results with the pathology. Sometimes a Marsh 1 is called negative, but it might also be celiac in the early stages.
  8. RMJ
    I was gluten free (no gluten ingredients) for 2-1/2 years, I couldn't have a biopsy, but prior to going gluten free was high positive on five blood tests (Ttg IgA and IgG, DGP IgA and IgG, and EMA). I was tested due to genetics plus frequent migraines, not due to GI symptoms, although I have had mild troubles with nausea and stomach pain on and off during...
  9. RMJ
    I do feel good on this diet. Little stomach issues that my doctor discounted, or that I blamed on something else, have gone away. I use Hershey's cocoa. It is not my favorite but it is on their gluten free list.
  10. RMJ
    I think I will count cocoa as a dried bean!
  11. RMJ
    Well, I confess (is there an emoticon for embarassed?) to not following it 100% (it is my idea to do it, not my doctor's). I have added Corn Chex, Lundberg rice cakes, and hot cocoa made with Hershey's unsweetened cocoa and sugar.
  12. RMJ
    Coffee is not listed under beverages, unless you want to stretch things a bit and say it is 100% fruit/vegetable juice. Here is a link to the paper that discusses the diet. I am on the diet at the moment, trying to get my antibody levels down, It is so limiting that it does make shopping easy! Open Original Shared Link
  13. RMJ
    1) It is very, very, very unlikely that celiac diagnosed at your age would lead to cancer, assuming you go on a gluten free diet after diagnosis. Cancer (lymphoma) develops after years and years of untreated celiac, and only in a small portion of those untreated people. 2) Three months on a gluten free diet isn't very long, probably not long enough to...
  14. RMJ

    ARCHIVED How Precise?

    RMJ replied to murphy203's topic in Gluten-Free Restaurants

    Oh, I agree. I'm okay with the commitment, but it would be easier to find the source of gluten contamination if I had symptoms. But on the other hand, I'm lucky that I don't have to suffer through symptoms.
  15. RMJ

    ARCHIVED How Precise?

    RMJ replied to murphy203's topic in Gluten-Free Restaurants

    I am also almost asymptomatic. For two years I've done "no gluten ingredients". Some of my antibodies are back into the normal range, but not all. So that level of gluten free isn't enough for me (I'm now trying the Fasano gluten contamination elimination diet).
  16. RMJ
    Just a thought, if your new doc doesn't know that many foods besides white bread will work perfectly well for a gluten challenge, does he really know how to interpret your previous biopsy results? Can you get a copy and post them here? Enjoy your gluten while you can!
  17. RMJ
    I've tried to be gluten free but my annual blood tests say that I'm not (DGP). Since I don't have symptoms, without that test I wouldn't know that "no gluten ingredients" isn't enough for me.
  18. RMJ
    Another mouthwash that doesn't burn is Therabreath.
  19. RMJ
    Uceris is an extended release version of budesonide.
  20. RMJ
    Corticosteroids such as Uceris can have serious side effects, and the official FDA-approved labeling is for using it for only 8 weeks. Open Original Shared Link My gastroenterologist isn't being very helpful either. She will order blood tests when I request them, but my antibody levels have NOT all gone down to the normal range (2-1/2 years), she gives...
  21. RMJ
    The body tries very hard to maintain calcium levels within the proper range - it does this by removing calcium from the bones if necessary. Normal calcium blood levels with low calcium in bones (osteoporosis) is explainable.
  22. RMJ
    How nice of you to make the whole house gluten free for your son
  23. RMJ
    I would try to get the blood tests as soon as possible IF the doctor understands that you have been gluten free for a few weeks, a NEGATIVE RESULT WOULD NOT MEAN ANYTHING, and that tests might have to be repeated after a gluten challenge. It often takes more than 4 weeks for antibody levels to go back to normal. You might even be able to order the tests...
  24. RMJ
    You could ask to have your anti tTG blood test repeated. If still positive, it is likely you are still eating enough gluten to cause your symptoms (and I agree with the others, based on your description of what you eat it sounds like you are getting gluten contamination). If negative, you might need to look for another cause. I have not eaten foods with...
  25. RMJ
    Tests for antibodies to gliadin and to deamidated gliadin peptides are different tests, the latter being newer and more specific.
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