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RMJ

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Everything posted by RMJ

  1. RMJ
    Were your husband’s, sister’s and your tests run at the same lab? One can only compare tests made by the same manufacturer because the units for these tests are arbitrary, not absolute. That said, if at the same lab, I wouldn’t call<2 and 2 different. If the exact same sample is run multiple times the results can easily be a little different each ...
  2. RMJ
    I don’t know, but there is a DH forum as part of celiac.com - you might ask there. DH forum
  3. RMJ
    Since you have a referral to a dermatologist, I would ask him to do a skin biopsy for dermatitis herpetiformis.
  4. RMJ
    I don’t think there is a “usual” for Phase 3 length. There are a lot of factors that can affect how fast subjects can be enrolled: number of clinical sites, prevalence of disease in the population, how hard the investigators (doctors) work to enroll patients, how strict the inclusion/exclusion criteria are, etc. My guess is that enrollment really slowe...
  5. RMJ
    Translation: The observed benefit (improvement of symptoms) was very small. FDA requires statistically significant results. In order to see a statistically significant result for a small change, a lot of subjects are required. It looks like they will be analyzing the data to see if there is a subgroup of patients that the drug helps more. For...
  6. RMJ
    I worry about getting contaminated by something that contains gluten. I worry about eating something that might be contaminated with gluten. But I don’t worry about getting contaminated by something that might be contaminated with gluten. At that point I feel the risk, and the possible amount of gluten, would be extremely low.
  7. RMJ
    Gluten is in a lot of processed foods besides bread. I didn't eat much bread before my diagnosis but still got enough gluten for high antibody levels. Hopefully now that you have a diagnosis and will soon have iv nutrients you’ll start feeling better and will become less and less scared. We’re here to support you.
  8. RMJ
    If you WANT to have it in your medical record, to be really accurate you could say “abnormal celiac antibody test.” That is what was in my record prior to my endoscopy.
  9. RMJ
    I don’t think there’s any reason to believe one of the tests over the other, so that really leaves you with no answer! Perhaps your doctor would be willing to reorder that test, and add in the rest of the celiac panel? TTG IgA (repeat) TTG IgG DGP IgA DGP IgG
  10. RMJ
    I want to feed my dog gluten free dog chow, not for her health but to have less chance of gluten contamination for myself. I do not want to feed her grain free because there might be possible health issues with that. In case someone is interested, I have found two dog chows that include grains but do not include wheat, barley or rye in the ingredient...
  11. RMJ
    In the US it is unusual to have a result of zero. Very low results are usually listed as less than some number (for example, <2). I would at least ask the doctor for a printout of the results.
  12. RMJ
    No, antibodies cannot drop that fast. Something about this is strange. Was the test run by the same lab? Was it the TTG IgA test both times? There are other blood tests for celiac antibodies - did the doctor order a different one?
  13. RMJ
    After two years of normal antibody results I had a low positive DGP IgA result. I decided it was either from an antibiotic that I took, or from gluten free (but not certified) flours that I was using. The antibiotic was short term, and I switched to certified gluten free flour, and it went back down to normal.
  14. RMJ
    FYI - Zea mays is corn, so Zea mays starch is corn starch.
  15. RMJ
    With all four positive it’s very likely celiac. Be sure to feed him all of his favorite gluten-rich foods between now and his endoscopy. You don’t want the damage to heal before the endoscopy by going gluten free too soon, plus he’ll probably be gluten free afterwards.
  16. RMJ
    Good catch! What is the new range/cutoff for normal? The units (U) in U/mL are arbitrary units set by each manufacturer. Each manufacturer of tests can set their own units. The numerical results from different test manufacturers can’t be compared.
  17. RMJ
    That is frustrating! Are you sure that those are the results from the biopsy and not the results from the doctor’s visual observations? I only ask because next day service is technically quite possible, but also quite unusual for biopsy results. Biopsies can miss celiac disease, the damage can be unevenly distributed. You can always go gluten f...
  18. RMJ
    When celiac blood tests were developed, the scientists would take blood samples from people with and without active celiac disease as determined by biopsy, and test those samples on their blood test. They would look at the results, and choose a cutoff for positive vs negative that maximized the number of results that were correct, as based on biopsy results...
  19. RMJ
    I’d say the damage is moderate. You still have villi and in some areas they are normal. In severe damage there is complete villous atrophy. I’m glad you have a definite diagnosis and were diagnosed before it got any worse!
  20. RMJ
    The immunoglobulin A (IgA) test is not a test for celiac disease. It is run to see if you are deficient in total IgA. If someone is deficient in total IgA, negative results in the celiac-specific IgA test can be misleading and the doctor should then order IgG tests. You are not deficient in total IgA, you are a bit high. Probably nothing to worry...
  21. RMJ
    I’m guessing it may be partly because endoscopy/biopsy was a procedure long before the blood tests were available.
  22. RMJ
    PME, I’m also a silent celiac. The only way I know for sure if I’ve had exposure is my once a year celiac antibody tests.
  23. RMJ
    You are correct. Your new GI is not. If you’ve been on a gluten free diet you should have healed and an EGD or blood tests for celiac antibodies will no longer find any signs of celiac disease. Your celiac disease is no longer active, but you still have it. I think you need a new, new GI.
  24. RMJ
    It only takes a day or two to process the biopsies, but how long it takes probably depends on how busy the laboratory is that processed them and how busy the pathologist is who reads them. What is the normal range for your test results? I see in another post that you say it is a high positive. Having several relatives with celiac disease increases...
  25. RMJ
    I think I see the wording in two sentences that is causing the arguments here, I hope no one minds if I try to “referee”: “Nothing breaks down all gliadin before reaching the small intestine.” “GliadinX helps ensure that even small amounts of gliadin do not make it to the small intestine.” In the first sentence, the crucial word is “all”, a...
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