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RMJ

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Latest Celiac Disease News & Research:

Everything posted by RMJ

  1. RMJ
    If your celiac antibody tests are still positive that may explain the ongoing symptoms. You might examine your diet and try to get those tests in the normal range before doing something like an MRI or CT scan. It took me almost six years to get all of my antibody tests in the normal range. At first I thought I was eating gluten free by avoiding wheat...
  2. RMJ
    I’d say celiac is likely. Please continue to eat plenty of gluten until your endoscopy to be sure that any gluten-related damage can be seen. Plus it gives you one last chance to enjoy your favorite gluten-containing foods. I hope the endoscopy/biopsies give you a definitive answer.
  3. RMJ
    How frustrating! The Endomysium antibody result is usually given as a titer, 1:5, or 1:10, or 1:20. This indicates how far the serum can be diluted and still give a positive result. It could be going down but the way they show the results you can’t tell. If you click on the “view trends” button on an electronic version of the results does it show any a...
  4. RMJ
    Wow. Thanks for following up on this. Paperwork and one test? I used to think that gluten free certification meant something.
  5. RMJ
    That is strange. Other pages talk about testing. The one thing I like about GFCO is that the handbook for their certification process is available on their website. I may not agree with the whole process, especially the reduced testing, but at least I can see what the process is. I wish the other certifying organizations would publish their processes...
  6. RMJ
    GFCO does not require testing of each lot, so the “periodic laboratory analyses” fits their requirements. They say testing is done by certified bodies. I’m not sure what that means for an Italian company. The GFCO requirement is less than 10 ppm. Other gluten-free certifying companies may use other limits.
  7. RMJ
    From their email: “rely on analyses that confirm gluten is not detected” This means that they do testing.
  8. RMJ
    The GFCO handbook for the certification process requires testing, at least at first. After a certain number of gluten free batches they can reduce testing. So something doesn’t make sense here. Maybe oil is difficult to test and they made an exception? If so, they should be clear about that. Could it be that they test it at some other stage, rather t...
  9. RMJ
    Did you have any celiac antibody blood tests? Or just the gastroscopy/biopsy?
  10. RMJ
    Good idea! We don’t have a range hood/exhaust fan so I didn’t think of that.
  11. RMJ
    Scientist here: Actual steam shouldn’t contain gluten - the gluten molecule is too large and heavy. In distillation the larger/heavier molecules stay with the liquid. However a quick google search shows plenty of people who say they react when pasta is cooked. Vigorously boiling pasta water could also create droplets that are larger than steam droplets t...
  12. RMJ
    Soap, water and scrubbing won’t “kill” gluten, but it will physically remove it if done well if you also add a thorough rinse step.
  13. RMJ
    I’ve been to restaurants for lunch with people from work and not eaten anything. One time I just had a bowl of white rice. The restaurant didn’t care and nobody made any nasty comments. It took some bravery on my part to do that but it turned out fine. I just tell people I’m there for their company, which is more important to me than the food.
  14. RMJ
    I am also asymptomatic. Not everyone with celiac disease reacts the same way to the same amount of gluten, so it is impossible to say for you whether or not such small traces of gluten would be safe. I am tested for tTG-IgA and DGP IgA and IgG annually. My DGP IgA went up once when I was using a certain brand of supposedly gluten free flour, it went...
  15. RMJ
    Great investigation!
  16. RMJ
    The only good part I see in their response is the gluten free facility.
  17. 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.
  18. 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.
  19. RMJ
    Vitamin K is also thought to help bone health, although not all scientific studies agree.
  20. 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...
  21. 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.
  22. RMJ
    You can search here for certified gluten free olive oil GFCO productfinder
  23. 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 ...
  24. 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.
  25. RMJ
    I’ve had on and off swelling of a salivary gland below my jaw - sialoadenitis. It was very visible when it swelled though.
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