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RMJ

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by RMJ

  1. RMJ
    ELISA is the type of technology used to measure celiac antibodies and many other things, so I don’t know what test your doctor could be requesting. A trial of a gluten free diet sounds like a good idea!
  2. RMJ
    These are some of the possible side effects of Paxlovid from the labeling information. Other possible side effects include: o altered sense of taste o diarrhea o high blood pressure o muscle aches o abdominal pain o nausea o feeling generally unwell
  3. RMJ
    FYI - I’ve been getting email notifications when there is a new post on a thread where I made a post.
  4. RMJ
    You may be going a little overboard. Do you share desk space/computers etc? Disinfecting wipes won’t destroy gluten - it must be physically removed. But touching gluten isn’t a problem if you wash your hands before eating or touching your mouth. My husband still eats gluten at home and splashes food onto his keyboard. If I use his computer I just was...
  5. RMJ
    You could try a product like Poo-Pourri. I haven’t used it but it gets good reviews. You spray in the toilet before use and it is supposed to create a film on the top of the water that traps the odor. It wouldn’t help with wind though.
  6. RMJ
    My values continued to get lower even after they were in the negative range - except for a time I was using gluten free flour that wasn’t quite as gluten free as it could have been.
  7. RMJ
    Congratulations! You should be proud. It took me 6 years to get all antibody levels to the normal range. DGP IgA was really stubborn.
  8. RMJ
    I do worry that if you and your daughter decide that she should go gluten free, she may not be particularly careful, since the doctor gave her the option to continue eating gluten. If she only goes sort of gluten free it would be hard to evaluate at the one year retest.
  9. RMJ
    Yes, it is called “silent celiac.” I have no particular symptoms, although I find that I just feel better now that I am gluten free. It is not possible to return to eating gluten again after the intestines heal. The antibodies would go back up and the damage return.
  10. RMJ
    Can you get a second opinion? Take the blood and biopsy results to another gastroenterologist? Some doctors, even gastroenterologists, can be real idiots when it comes to celiac disease. I wonder what it would take for your daughter’s gastroenterologist to say that someone does have celiac disease. Perhaps total villous atrophy? Your daughter h...
  11. RMJ
    As I said answering another of your posts, the pathologist doesn’t have the whole picture (clinical signs/symptoms, serology) so lists all the options to explain what he/she saw. This is standard for pathologists. He/she suggests clinical/serological correlation. Based on a previous post, your daughter has two positive antibody tests for celiac disease -...
  12. RMJ
    What type of doctor have you been seeing? Some don’t know a lot about celiac disease. You may want a new doctor. I see a problem with what your doctor said: “dermatitis herpetiformis, which is the rash that is associated with gluten sensitivity.” That phrase is missing a word. DH is the rash associated with gluten sensitive enteropathy. Gluten sensi...
  13. RMJ
    Perhaps enjoy your favorite gluten-containing foods now because it is extremely likely you’ll be diagnosed with celiac disease and need to go gluten free after your endoscopy!
  14. RMJ
    In that case, it sounds like the sort of thing a pathologist would say in a biopsy report. My biopsy report included other disorders that could cause the change in villi that was seen, even though the pathologist was aware of and mentioned the blood test results. Please let us know what the gastro says when you see him/her!
  15. RMJ
    Was the “suggestive of coeliac” from visual observation of her duodenum? Or the pathology results from the biopsy? Was it written by a different doctor than the one who ordered the blood tests? It may just be “doctor speak” from someone who just has partial information. My guess is that when her gastroenterologist puts together the blood results and end...
  16. RMJ
    Clearly something changed between February and August. If all tests were run at the same lab, that amount of increase would not be due to a one time contamination or mistake. I would look at what has changed in her diet (including any drugs/supplements) and her environment. For example she using a new brand of gluten free flour (that increased my antibodies...
  17. RMJ
    I was wrong, see page 3. The FDA labeling regulation does cover dietary supplements. Unfortunately, the FDA doesn’t require testing in order to label something as gluten free (which I know is very strange). FDA gluten free labeling information
  18. RMJ
    From the EZGluten website: “Can I test non-food items such as supplements, enzymes, medications, cosmetics, toiletries and cleaning products?” “The EZ Gluten® test was designed and validated for testing foods. While it will also work in a variety of other sample types, we cannot guarantee the results or the limit of detection for non-food items....
  19. RMJ
    Have you actually been diagnosed with dermatitis herpetiformis? If so, you definitely need to be on a strict gluten free diet.
  20. RMJ
    Yes, people often post pictures of their results without identifiable information.
  21. RMJ
    Is that total IgA, of one of the celiac antibody tests?
  22. RMJ
    The women’s ranges probably start to diverge from the men’s at 14-15 years old due to the beginning of menstruation, and monthly loss of iron. Are these ranges from the lab that ran the test? Looking on the internet the ranges are not all the same, even though the units used by labs are the same. And the ranges are huge!
  23. RMJ
    If the result is >x, it is because the sample is outside the range that will give an accurate number. It is like if you had a bathroom scale that went up to 250 pounds, but someone who was 500 pounds stepped onto it. You’d know it was >250, but you wouldn’t know the actual weight. The FDA authorizations for the celiac antibody tests are for dia...
  24. RMJ
    The ranges are different because the units in which results are reported are different. It is as if one test manufacturer used micrograms and one used ounces, but the celiac test units are arbitrary and there is no conversion factor for comparing them. The reason? There is no standard with known mass of antibody per volume of liquid. To have a standard...
  25. RMJ
    In order to get my antibody levels down to a normal range I had to switch to only eating packaged foods that are certified gluten free, or come from a company with an excellent reputation amongst celiac patients. Not everyone is this sensitive. Of course meat, milk, fresh fruits and vegetables are naturally gluten free so I can eat those.
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