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RMJ

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Everything posted by RMJ

  1. RMJ
    I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and g...
  2. RMJ
    I think Tierra Farms is a gluten free facility, at least that is what it says on the bag of walnuts that I have.
  3. RMJ
    I’m so glad they listened to your concerns! I hope you get some answers from the MRI.
  4. RMJ
    I have trouble with nausea. It often starts when I’m anxious about something (home repairs, sick dog) but continues long after the home is repaired or the dog is healthy again. When it happens I eat less and lose weight. My gastroenterologist suggested ginger or peppermint tea. I don’t know if that will work or not because I haven't had the problem since she...
  5. RMJ
    I wasn’t clear, glucagon and gadolinium were intravenous. I drank about 5 cups of the prep during 45 minutes. I feel very tired now, probably partly because I was nervous, and partly because I had to fast for 6 hours beforehand and wasn’t very hungry when I got home.
  6. RMJ
    The solution I had to drink contained sorbitol and mannitol. I was in the MRI, lying on my back, for about 40 minutes. I was given glucagon partway through, and a gadolinium contrast agent. After I got home there was some diarrhea from the prep solution.
  7. RMJ
    I’m having this type of MRI this afternoon, What specifically do you want to know? From what I’ve read, not all facilities use the same drink prep.
  8. RMJ
    A much better suggestion than that of the new doctor!
  9. RMJ
    Not only is the doctor being ridiculous, having her make herself ill so he can re-diagnose her already diagnosed celiac disease, but one week of gluten, while able to cause GI symptoms, might not be enough to cause new damage visible with a biopsy. So if she follows his advice he might say she doesn’t have celiac disease! She needs a different doctor. ...
  10. RMJ
    The incidence of autoimmune diseases in general, including celiac disease, has increased. There are various theories as to why. The environment we live in, diet we eat, toxins we’re exposed to, stress levels, activity levels and infectious diseases to which we are exposed are all quite different now. A robust immune system that would have been an advantage t...
  11. RMJ
    Update: I have a wonderful new gastroenterologist. She wants to be sure there’s nothing more serious, like refractory celiac, going on. She ordered various tests including some micronutrient tests that no one has ever ordered before. I’m deficient in folate and zinc and starting supplements for both. I’m so glad I decided to go to a new GI!
  12. RMJ
    It is more likely code for “we think there really was a good response to the treatment, but it was small or in a small percent of subjects so it would take a large clinical trial to try to prove it.”
  13. RMJ
    It can take longer than 6 months for antibodies to drop to the normal range, My DGP IgA took a few years as I got stricter and stricter about being gluten free But having symptoms again could also mean you’re getting some gluten in your diet.
  14. RMJ
    That means the normal range (i.e. not celiac disease) would be a result less than 14.99. Your result is WAY above that. Some gastroenterologists would diagnose that as celiac disease even without a confirming biopsy because it is more than ten times the top of the normal range.
  15. RMJ
    To evaluate the TTG antibody result we’d need to know the normal range for that lab. Labs don’t all use the same units. However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. Y...
  16. RMJ
    When you say the endoscopy showed potential flattening and atrophic villi, Is that the visual result and you’re still waiting for the pathology report on the biopsies? It is quite possible to have the endoscopy look ok and the biopsies show celiac damage. That happened at my last endoscopy. It is also quite possible to only have damage in some areas. ...
  17. RMJ
    I think keeping the information to yourself is a good idea. In fact, many doctors won’t give an official diagnosis without a biopsy so if someone asks if you have celiac disease and all you have are blood test results a “no” answer wouldn’t be totally wrong🙂. Until I had a biopsy my medical chart just said positive celiac antibodies, not celiac disease. ...
  18. RMJ
    Be sure to have her continue eating gluten before the biopsy. Reducing gluten now could lead to healing and false negative results.
  19. RMJ
    Reference range 0.00 to 10.00 means that within that range is normal, so not celiac. There are other antibodies that can be present in celiac disease and they don’t all have to be positive to have celiac. I’m sure someone else will post a link to an article describing them! Plus, if you are IgA deficient the celiac IgA tests won’t be accurate.
  20. RMJ
    What is the normal range for your TTG IgA test? The units are not standardized so they can vary from lab to lab. The normal range is usually listed as <# (less than a number), so anything less than that number is considered negative. TTG IgA results should never be presented as 0 U/mL because this type of test has a lower limit of detection - i...
  21. RMJ
    HLA-DQ2 is NOT a continuum 2.01 to 2.99, but I don’t understand HLA genetics well enough to explain it further. It is not just one gene that is either this or that.
  22. RMJ
    Gluten free flours can be very different, even from one manufacturer. For example, King Arthur has two certified gluten free flours that act quite differently in some recipes. I find that it is best to use the recipes on the website of the manufacturer of the flour, although I often bake for a shorter time than listed. I like this recipe for chocolate...
  23. RMJ
    The test result will never be shown as zero because the most negative the result can be reported as is less than the lowest amount the test can detect. For example, you might see <2. What is the normal range for your daughter’s test? Antibodies can hang around in the body for a while. Even if her result is not yet in the normal range, going from m...
  24. RMJ
    @Wends Thank you for your thoughts. I am going to go to a different GI in September (first available appointment) who will hopefully give me more guidance than my current GI, who has given me none. I would call my antibody levels super sensitive, but not symptoms. Eating purity protocol certified gluten free oats does not affect my antibody levels. ...
  25. RMJ
    I’m frustrated with celiac disease and my current gastroenterologist (GI). I’ve been gluten free for almost 13 years, with normal antibodies for almost 8 years - except for one excursion of my DGP IgA 5 years ago which returned to normal when I changed brands of gluten free flour. All 4 celiac antibodies were positive 13 years ago but I didn’t h...
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