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RMJ

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Everything posted by RMJ

  1. RMJ

    ARCHIVED Lost

    RMJ replied to beth01's topic in Coping with Celiac Disease

    Does your boyfriend eat gluten? Does he brush his teeth before kissing you?
  2. RMJ
    Three weeks isn't long enough, sorry. You should go a few more. But two slices of bread a day should be enough. This paper describes the time course of the antibody increase. Open Original Shared Link
  3. RMJ
    Transcript of meeting now available. Open Original Shared Link
  4. RMJ
    Thank you for this very helpful review!
  5. RMJ
    Thank you for asking this question. Occasionally I feel anxious but not about anything specific. Next time that happens I'll evaluate what I've eaten for possible gluten contamination!
  6. RMJ
    Not everything with soy has gluten. Soy SAUCE, unless it is the gluten free type, is made with wheat and soy.
  7. RMJ
    The FDA had a workshop in March about development of treatments for Celiac. This webpage has the presentations (below the IBS presentations). Open Original Shared Link I learned some interesting things. For example, the blood tests are not actually approved for monitoring recovery, just for aid in diagnosis. The FDA is supposed to issue a transcript...
  8. RMJ
    Another form of evidence would be to go gluten free and see if the antibody levels normalize.
  9. RMJ
    I can't think of a particular food or recipe, but if it were me, knowing what I do now, I'd go out to a restaurant with friends. Maybe a pizza place. Some place I couldn't trust to be gluten free.
  10. RMJ
    It definitely is unusual to have TTG negative and EMA positive. I searched the medical literature and found one paper that suggested it could be early celiac (see section on latent celiac): Open Original Shared Link The lab that my doctor now uses doesn't even do the EMA unless the tTG is positive. And it is strange, and very annoying, that Labcorp doesn...
  11. RMJ
    Endomysial antibody is usually pretty specific for celiac, although it does rely on a human looking through a microscope. Unfortunately, Labcorp only says positive or negative and does not give the titer, which would enable you to know if it was a weak positive or a strong positive. (I tried to get my titer from them but couldn't).
  12. RMJ
    Yikes, you definitely need a new doctor!
  13. RMJ
    The autoimmune reaction starts in the gut, but those antibodies get into the bloodstream and circulate around the whole body. I don't think the biological mechanisms for all of the problems that can be seen in celiacs are known.
  14. RMJ
    Are there degrees of sensitivity? As a scientist I must respectfully disagree and say yes, although this does NOT mean that any celiac should ever knowingly eat something that may have been contaminated with gluten! When the FDA set the acceptable level for labeling gluten free food they evaluated and summarized the scientific literature. Studies have...
  15. RMJ
    Could you be anemic?
  16. RMJ
    Can you call the lab and ask? DGP is deamidated gliadin peptides, so it sort of is a gliadin test. I don't see why they would put DGP in the name if it wasn't relevant to what was done.
  17. RMJ
    If you think lactose bothers you (common in celiacs) I think you may be able to eliminate that now without messing up any celiac tests? Does anyone know for sure?
  18. 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.
  19. 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...
  20. 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
  21. 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.
  22. 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.
  23. 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...
  24. 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.
  25. 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...
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