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RMJ

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Everything posted by RMJ

  1. RMJ
    Some doctors just will not give an official celiac diagnosis without the endoscopy. Luckily, you can treat yourself with a gluten free diet without it! Due to reasons unrelated to celiac disease, I could not get an endoscopy right away. My official diagnosis was “abnormal celiac antibody panel.” As time went on my gastroenterologist considered me to be ...
  2. RMJ
    You say you’re really trying to watch the gluten, but you just posted on another thread that you eat the toppings off of a gluten-containing pizza crust. You clearly need to be much more careful about gluten contamination.
  3. RMJ
    That is NOT a good idea if you have celiac disease. There will be a lot of gluten contamination of the toppings.
  4. RMJ
    Smooth stainless steel should be fine, as should your oven. Just give them all a good cleaning.
  5. RMJ
    Some doctors have endoscopes with better magnification than others. If your doctor didn’t have one with excellent magnification, the duodenum could have looked healthy, but biopsies still show celiac disease under the microscope. That is why biopsies are performed.
  6. RMJ
    I hope you get a definitive answer from your biopsies!
  7. RMJ
    I agree, the “jelly” is probably mucus. The large intestine can put out copious quantities of mucus if it is especially irritated. Nausea is the only celiac digestive symptom that I had.
  8. RMJ
    Trents, a slice of bread has a lot less gluten than 25 grams! It only has a few grams of protein per slice, I looked at a few labels online and a slice has approximately 2-4 grams of protein. So two slices of bread would be 4-8 grams of protein. Assuming all of the protein is gluten, 4-8 grams gluten per day should be plenty.
  9. RMJ
    I’m glad it had an easy explanation! That makes sense, crying,breathing hard, breathing out more CO2, leading to a lower level.
  10. RMJ
    This link has some information. Why was it tested? It isn’t a routine test. Carbon dioxide in blood
  11. RMJ
    I’m very glad to hear your wife is doing better with prednisone, even if the doctors don’t have a clear diagnosis. Thanks for the update!
  12. RMJ
    It took 6 years for one of my celiac antibodies (DGP IgA) to come down into the normal range. At first I just read labels and if purchasing processed foods avoided those with gluten-containing ingredients. Antibody levels were lower but still high. Then I switched to processed foods actually labeled gluten free. Antibody levels still lower, but still...
  13. RMJ
    Ingredients are listed at the bottom of page 1. Paxlovid labeling
  14. RMJ
    I can see how crumbs on a doll could be a worry. I know enough to wash my hands after touching something that may have had gluten on it. Would your niece be willing to wash her hands every time she was done playing with the doll, before she might put her fingers in her mouth? Does she ever kiss her doll? One of my celiac antibodies didn’t return t...
  15. RMJ
    You’ve had the 5 standard blood tests for celiac (TTG IgA and IgG, DGP IgA and IgG, and EMA (Endomysial Antibody). You don’t have to have all five positive to have celiac disease. Some people are only positive on one, so your results are normal. Eating gluten once in a meal if one has celiac disease is a definite concern. Think of it as a booster sho...
  16. RMJ
    This is the only paper I can find about your question. In this case there were stressful events within a year of celiac disease onset, mean 5.5 +/- 4.1 months. Life Events and the Onset of Celiac Disease Any such research would have to be purely observational, looking backwards from the time of diagnosis - it would obviously be unethical to try...
  17. RMJ
    The endomysial antigen test is very specific for celiac disease. They make serial two-fold dilutions of serum - 1:5, 1:10, 1:20, 1:40, 1:80, etc. Then they apply the serum to a microscope slide that has a type of tissue on it that includes the endomysial antigen. Celiac antibodies bind to the antigen. They then wash and add another solution that enables...
  18. 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 ...
  19. RMJ
    I don’t know, but there is a DH forum as part of celiac.com - you might ask there. DH forum
  20. RMJ
    Since you have a referral to a dermatologist, I would ask him to do a skin biopsy for dermatitis herpetiformis.
  21. 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...
  22. 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...
  23. 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.
  24. 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.
  25. 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.
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