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RMJ

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Everything posted by RMJ

  1. RMJ
    Yes, you need to be eating plenty of gluten prior to an endoscopy, for at least two weeks. A slice or two of bread per day should be enough. If I were you, I’d get the blood test now, in the manner you mentioned, so that if negative because you’re gluten light it won’t be in your medical records. If doctors saw a negative result they might stop looki...
  2. RMJ
    How much wheat/rye/barley are you eating at the moment? I can’t tell if you went gluten free after your test 11 years ago.
  3. RMJ
    I like to go to the manufacturer for this type of information. Found this on the Nesquik site, although sometimes the answers can vary depending on the country where the item is sold: https://www.nesquik.com/en/faq “All Nesquik ready-to-drink products are gluten free. None of the Nesquik Powder varieties are gluten free and may contain wheat. Please r...
  4. RMJ
    Each manufacturer of the test has their own range for what is positive. Do you know the normal range for your test? Also, some people with celiac disease have normal transglutaminase antibodies but high deamidated gliadin peptide antibodies. Not all doctors order the test for the latter.
  5. RMJ
    I think the anti-TTG is showing how things are going with your daughter, not every doctor looks at anti-DGP.
  6. RMJ
    My anti TissueTransglutaminase came down to normal in a year but it took six years for my anti-DGP (deamidated gliadin peptide) antibodies to come down to the normal range. Your daughter’s results are definitely going in the right direction. They seem to drop about by half per year, perhaps next year they’ll be in the normal range. It is great that she...
  7. RMJ
    Lundberg has certified gluten free rice. I don’t know if all of their rice is certified but a lot is.
  8. RMJ
    Did the celiac panel include DGP (deamidated gliadin peptides)? Some panels include it, some don’t. Some people are only positive on the DGP test. Unfortunately, the degree of positivity on the celiac antibody tests don’t necessarily correlate with the amount of villi damage.
  9. RMJ
    It took me several years to get all of my antibody levels in the normal range, where they stayed for several years. I had my annual blood tests earlier this week and the DGP IgA was low positive, the DGP IgG was negative but much higher than usual. Even those of us with years of experience can mess up. I’ve tried to make a list of changes to diet/p...
  10. RMJ
    In 6 to 12 months you should have the blood tests redone. If the Deamidated gliadin IgA level goes down on the gluten free diet and if your symptoms improve, that would be evidence that gluten really is a problem.
  11. RMJ
    You could start with bloodwork, while on your current diet. If positive, it would indicate a problem with gluten, either the diet still contains some, or you’re not responding to the gluten free diet. However, if negative, it would not say anything about whether you have celiac disease because of being on the gluten free diet. If you’re having ann...
  12. RMJ
    Just an idea: Is the positive vs negative cutoff for your recent test the same as the previous ones? Each manufacturer sets their own numerical ranges. I think it is a good idea that you’re having another endoscopy. Hope it solves the mystery.
  13. RMJ
    There is a great book on eating disorders for patients and their loved ones, it is called The Golden Cage by Hilde Bruch. I would recommend it for your fiance. It will help him understand. If you go the in-patient route, be sure they are convinced of your celiac diagnosis so they don’t think you are refusing (gluten) food because of your other eating i...
  14. RMJ
    This website has the oxalate content of teff flour, but I don’t know anything about the reliability of the source. http://roosclues.blogspot.com/2012/01/oxalate-levels-of-grains-and-starches.html
  15. RMJ
    EDTA salts are chemically synthesized. It is very unlikely that the ingredient would be contaminated with gluten.
  16. RMJ
    False positives are possible, although unlikely. It is very possible to have celiac disease without symptoms, but with intestinal damage.
  17. RMJ
    Yes, it looks like a strong positive. The standards that the lab used to quantify the result only go so high. Theoretically a lab could dilute the sample and rerun to get it within range, then multiply the result by the dilution factor, but since it is definitely positive there’s really no reason for them to do that.
  18. RMJ
    The TTG numbers are expressed in arbitrary units which are not the same for all manufacturers of the tests. Therefore they can’t always be compared between labs. The TTG numbers are also not intended to indicate the degree of intestinal damage. The tests are evaluated by the FDA just looking for a correlation between a positive test and a positive b...
  19. RMJ
    Some people with celiac disease can’t eat any oats - they get the same reaction as to wheat, rye and barley. For those that can eat oats, there is the issue of contamination by other grains in the field, transport and storage. Quaker uses a sorting process that is supposed to remove other grains, but according to this page from their website, only i...
  20. RMJ
    One way to look at it, would the results of the endoscopy change your treatment? Unlikely. If there was no damage seen - great! If there was damage seen, it is only 5 months and your antibodies are not yet normal, so there could quite reasonably still be some damage. You already are on a gluten free diet. You’re doing well. Keep up the good work. ...
  21. RMJ
    Part II, April 1: ”Ironically, Pritchett was feeling well enough to ask his wife to go through the drive-through at McDonald’s and get him a couple of breakfast sandwiches and a Coke, then head to the hospital.”
  22. RMJ
    Oops, that should be endomysial antigen.
  23. RMJ
    EMA stands for endomysial antibodies. To run the EMA test, microscope slides have a thin slice of tissue put on them that includes a type of tissue called endomysium. Dilutions of the blood sample are added. If the person has celiac disease, their antibodies bind to the endomysium. Several other steps are performed to allow the antibodies to be visualized...
  24. RMJ
    The EMA and TTG IgA test look at the same IgA antibody, but the test is run quite differently. Both take blood samples, but the EMA test is read by having someone look under a microscope. I’ll see if I can find an explanation - I know the difference but being able to explain it is different than knowing it!
  25. RMJ
    The EMA usually looks for the Transglutaminase IgA antibody, which in your daughter’s case isn’t applicable due to her IgA deficit. With the antibody levels going down and symptoms resolving on the diet, I think you can be pretty sure she has celiac disease without need for a gluten challenge and biopsy.
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