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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
    Even if you were to have a negative biopsy, you don’t need a doctor’s permission to try a gluten free diet! (after all testing is complete, of course).
  2. RMJ
    Some researchers are working on it, but currently there is no medically accepted way to test for celiac right now without eating gluten.
  3. RMJ
    This link allows you to look for foods/ingredients certified gluten free by this organization. They are not the only organization that does these certifications however. Product finder
  4. RMJ
    If you have been gluten free for several months, celiac disease is harder to diagnose, because if you had it the healing process will have started.
  5. RMJ
    The recommendation is two slices of wheat bread per day to get enough gluten for the tests to be accurate. That could be a sandwich at one meal, and for the rest of their foods you could try gluten free options to see what they like/dislike.
  6. RMJ
    Maybe stay on gluten for now, and make sure they get to eat plenty of their favorite foods with gluten since they likely will need to go gluten free later?
  7. RMJ
    Congratulations! You’re doing the gluten free diet right!
  8. RMJ
    Immunoglogulin A is total IgA, and only run as a control to make sure you’re not deficient in IgA. If you were, the other IgA tests might not be accurate. So you were only checked for one celiac-specific antibody. I was checked for 4 and they all were positive. Deamidated gliadin peptide IgA is the one that took years to normalize.
  9. RMJ
    I never had the initial endoscopy for reasons unrelated to celiac. I have a bleeding disorder and need to take medication prior to biopsies. I had a hematologist who didn’t believe I could have celiac without digestive symptoms and she wouldn’t prescribe the medication. My endoscopy was after I had a new hematologist and needed a colonoscopy anyway. It ...
  10. RMJ
    Whether the doctor can see celiac damage or not during the endoscopy mainly depends on the magnification available with their endoscope. My doctor was at a university with fancy equipment so she could see the villi. Many doctors don’t have access to such equipment.
  11. RMJ
    While some people with celiac disease have very slow recovery of villi on a gluten free diet, some people do heal nicely. Looks like you are one of those. You certainly know that you should avoid gluten, since eliminating it led to healing of your villi. Most people with celiac disease have a certain genetic pattern, but there is a small percentage...
  12. RMJ
    In addition to seeing if your symptoms go away on a gluten free diet, as Scott recommended, you can see if your antibody levels go down.
  13. RMJ
    I am sorry you are having such an upheaval in your life. I hope you can find peace by leaving the emotionally abusive situation. This map shows restaurants/hospitals/senior living facilities that have been well-trained in gluten free procedures. Unfortunately, there aren’t many of them. In my state the only things that show up are two restaurant c...
  14. RMJ
    It sounds like you know what you plan to do. Sometimes endoscopy results (if positive) can help to convince OTHER people that your child needs to be gluten free. But that may not be a good enough reason to put your child through it.
  15. RMJ
    You’re correct, washing your hands with soap and water should remove any gluten you may have picked up by touching the counter!
  16. RMJ
    I am quite sensitive but share a kitchen. My husband and I have separate food prep areas. We have separate dishes because we don’t have a dishwasher and when my husband washes dishes I can see residue on them. If we had a dishwasher I’d share dishes. We have separate shelves in cupboards, refrigerator and freezer. Mine are above his so not...
  17. RMJ
    I’m so glad you’re feeling better!
  18. 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...
  19. 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...
  20. 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: ...
  21. 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...
  22. 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...
  23. 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...
  24. 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. ...
  25. 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
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