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RMJ

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Everything posted by RMJ

  1. If you have smooth dishes and utensils and they are visibly clean you should be fine. Things like wooden spoons and scratched plastic are what could be a problem because they are hard to get genuinely clean. My husband who eats gluten has his own dishes and utensils because we don’t have a dishwasher and I can often see/feel some bits of residue on h...
  2. This is certified gluten free: Country Life Maxi-Collagen I just went to the GFCO (Gluten Free Certification Organization) website, which certifies products as being gluten free, and put collagen into the search box. There were quite a few listings. GFCO product finder
  3. I would not call 37 significantly higher than 36. If a lab ran the same blood sample 10 times they would sometimes get 36 and sometimes 37. Even so, it is frustrating that the level hasn’t decreased. Sometimes it can be difficult to find the hidden gluten that someone is exposed to.
  4. No, unfortunately if you eliminate gluten and then restart it can take weeks of eating gluten for the antibody levels to increase. The challenge does not get shorter by going without gluten for some time.
  5. Congratulations! I hope the biopsy confirms the good news from the antibody tests.
  6. The antibody tests aren’t actually approved by FDA for monitoring celiac disease after diagnosis - although many, many doctors use them that way. I would think another endoscopy/biopsy would be in order to see if his intestine is still damaged. Is he growing well? Does he have any unresolved symptoms? Or is the only issue the lab result?
  7. Here are some ideas: If you have DH you do NOT need to be tested for celiac disease, so perhaps a new gastroenterologist who understands this? One who would refer you to a celiac savvy dietician to look at everything you’re eating? Try the “Fasano elimination diet” described in this paper: Indications and Use of the Gluten Contamination Elimination Diet ...
  8. I’m so glad you’re having such success with a gluten free diet! 🙂 I hope the bad days become less and less frequent until they’re just a memory.
  9. The follow-up test was the EMA. Where my labs are done, it isn’t performed unless the TTG-IgA is positive. Sometimes this is called reflex testing. The lab would use the same blood sample, a new blood draw wouldn’t be needed. Was there a value for the EMA? It would be in the format 1:5, or 1;10, or 1:20, or 1:40 etc.
  10. Looking at the ingredients in your link, it is VERY unlikely that any of them are derived from wheat. Hydroxypropyl cellulose is usually derived from wood or cotton (per Glutenfreedrugs). There is always a chance that an ingredient could be contaminated, but again that is unlikely. Here is contact info for Mallinckrodt generics. You could contact...
  11. Here is some more information about brewer’s yeast from a dietician who advocates for proper gluten free labeling. Per her advice it would be ok because it is labeled gluten free. However, some companies mislabel their food, not knowing where gluten can hide. Brewer’s yeast and gluten
  12. Yes, it is possible to have only one antibody test positive and still have celiac disease. If someone with celiac disease stops eating gluten, the antibody levels typically come down. You might have had more/higher positives if you had been eating the recommended amount of gluten prior to testing.
  13. Does eating everything hurt your stomach? Or just some things? Smaller, more frequent meals might help. You can minimize the chances of accidentally getting gluten by concentrating on whole foods that don’t have labels to read - meat, fresh fruits and vegetables (maybe cooked so easier to digest). Rice is inherently gluten free if there are no flavorings a...
  14. You could go gluten free for 6 to 12months and have the deamidated gliadin IgG retested. If it was lower or normal it would certainly indicate that your body has a problem with gluten. Also you could see if you feel better when gluten free. Luckily a doctor’s prescription is not needed to go gluten free!
  15. Please keep eating gluten until your endoscopy so you get accurate results!
  16. If you go by Mayo clinic reference levels, your 5 year old is within the total IgA range. I found another site that had 1-5 year olds 20-152 mg/dL, so your 5 year old is just barely above that. Pediatric antibody reference levels
  17. Total IgA was measured and was a little high. IF it had been low, then the TT IgG antibody test would have been done (reflex). It was high, so the TT IgG antibody test was not done. So the only question is why the total IgA was a little high. Lab normal ranges for total IgA tend to vary a bit, so that slight elevation of total IgA is probably not...
  18. That test is for diabetes mellitus, what about diabetes insipidus? Diabetes insipidus
  19. It sounds like you’re not dehydrated but over-hydrated. Too much water can lead to the symptoms you list. Urine should not be colorless. If drinking less water makes you feel better, why not just drink less water? Too much water intake
  20. Looking at the prescribing information (see section 11 in link) CREON does not have any ingredients that would be expected to contain gluten. The ingredients are all pretty refined and thus also unlikely to be contaminated. If the enzymes were produced by bacteria one would have to look into the media the bacteria were grown in, but this is NOT the case...
  21. If the NSAID is a COX-2 inhibitor it shouldn’t have the typical adverse effects on the gastrointestinal system that COX-1 inhibitors have. Sucralfate is another drug that is sometimes taken to protect the gastrointestinal tract from NSAID effects. It works by forming a protective layer.
  22. My TTG IgA antibodies came down to normal in a year. My DGP IgA antibodies took six (yes, 6) years! I think you’re doing well.
  23. If you order the labs yourself, and do it now, you also don’t have to worry about a doctor giving up on a possible celiac diagnosis if tests are negative, because you can do the gluten challenge and order them again.
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