Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

RMJ

Advanced Members
 View Profile  See their activity

  • Posts

    1,550

  • Joined

  • Last visited

  • Days Won

    49

 Content Type 

Profiles

Forums

Events

Blogs

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

Everything posted by RMJ

  1. RMJ
    I understand lab tests but don’t know what to say about whether you have celiac disease or not. Biopsies can miss it. It is possible in most states in the US to order some of your own lab tests. Here is one place through which they can be ordered. You may want to order your own deamidated gliadin IgA test, to be performed by LabCorp (since they d...
  2. RMJ
    Yes, it is what I thought. Each line has to be read all the way across for those two tests. It certainly is a confusing layout on the page! The Endomysial Antibody IgA is a separate test from Immunoglobulin A, Qn, Serum (Qn probably stands for quantitative). The Endomysial Antibody IgA test was negative both times. It actually looks at the same antigen...
  3. RMJ
    The range that you are labeling as “endomysial antibody IgA” looks like the normal range for TOTAL IgA, which includes IgA towards all antigens. Does it have units? Perhaps mg/dL? Total IgA is often run to be sure the patient is not deficient, if one is deficient in total IgA then the celiac specific IgA tests may not be useful. Perhaps it is: ...
  4. RMJ
    Were the blood tests run at the same lab? Do they have the same reference ranges? That is an unusual endomysial antibody test result because of the way it is stated. Usually the result given is the highest dilution of serum that gave a positive result and is in the format 1:#, so 1:5, 1:10, 1:20, 1:40, 1:80, 1:160, 1:320, etc. Because of that I don...
  5. RMJ
    It took me 6 years to get all my antibody levels into the normal range. My husband still eats gluten but we keep things well separated in the kitchen. Have you tried the “Fasano Diet”? It is a trial diet to eliminate any possible sources of cross-contamination. Fasano Diet Do you eat oats? Some with celiac react even to certified gluten fre...
  6. RMJ
    I would recommend ordering the same test or tests that were high when you were diagnosed. There are four different antibodies that can be measured to diagnose celiac disease and not everyone has all four elevated. LabCorp has a panel with three of the four tests (TtG-IgA, TtG IgG, DGP-IgG). With WalkInLab you may be able to order individual tests...
  7. RMJ
    I was unable to have an endoscopy when diagnosed via antibody levels. (I have a bleeding disorder and my former hematologist wouldn’t prescribe the necessary medication to prevent bleeding from biopsies because I had no celiac symptoms). I had an endoscopy along with routine colonoscopy four years later (new hematologist) and still had Marsh 3a damage. ...
  8. RMJ
    I always like to go to the source of information. Here is a link to the FDA letter indicating that NMN cannot be defined as a dietary supplement in the US. FDA letter
  9. 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!
  10. 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
  11. RMJ
    FYI - I’ve been getting email notifications when there is a new post on a thread where I made a post.
  12. 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...
  13. 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.
  14. 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.
  15. 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.
  16. 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.
  17. 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.
  18. 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...
  19. 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 -...
  20. 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...
  21. 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!
  22. 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!
  23. 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...
  24. 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...
  25. 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
×
×
  • Create New...