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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
    When you say the endoscopy showed potential flattening and atrophic villi, Is that the visual result and you’re still waiting for the pathology report on the biopsies? It is quite possible to have the endoscopy look ok and the biopsies show celiac damage. That happened at my last endoscopy. It is also quite possible to only have damage in some areas. ...
  2. RMJ
    I think keeping the information to yourself is a good idea. In fact, many doctors won’t give an official diagnosis without a biopsy so if someone asks if you have celiac disease and all you have are blood test results a “no” answer wouldn’t be totally wrong🙂. Until I had a biopsy my medical chart just said positive celiac antibodies, not celiac disease. ...
  3. RMJ
    Be sure to have her continue eating gluten before the biopsy. Reducing gluten now could lead to healing and false negative results.
  4. RMJ
    Reference range 0.00 to 10.00 means that within that range is normal, so not celiac. There are other antibodies that can be present in celiac disease and they don’t all have to be positive to have celiac. I’m sure someone else will post a link to an article describing them! Plus, if you are IgA deficient the celiac IgA tests won’t be accurate.
  5. RMJ
    What is the normal range for your TTG IgA test? The units are not standardized so they can vary from lab to lab. The normal range is usually listed as <# (less than a number), so anything less than that number is considered negative. TTG IgA results should never be presented as 0 U/mL because this type of test has a lower limit of detection - i...
  6. RMJ
    HLA-DQ2 is NOT a continuum 2.01 to 2.99, but I don’t understand HLA genetics well enough to explain it further. It is not just one gene that is either this or that.
  7. RMJ
    Gluten free flours can be very different, even from one manufacturer. For example, King Arthur has two certified gluten free flours that act quite differently in some recipes. I find that it is best to use the recipes on the website of the manufacturer of the flour, although I often bake for a shorter time than listed. I like this recipe for chocolate...
  8. RMJ
    The test result will never be shown as zero because the most negative the result can be reported as is less than the lowest amount the test can detect. For example, you might see <2. What is the normal range for your daughter’s test? Antibodies can hang around in the body for a while. Even if her result is not yet in the normal range, going from m...
  9. RMJ
    @Wends Thank you for your thoughts. I am going to go to a different GI in September (first available appointment) who will hopefully give me more guidance than my current GI, who has given me none. I would call my antibody levels super sensitive, but not symptoms. Eating purity protocol certified gluten free oats does not affect my antibody levels. ...
  10. RMJ
    I’m frustrated with celiac disease and my current gastroenterologist (GI). I’ve been gluten free for almost 13 years, with normal antibodies for almost 8 years - except for one excursion of my DGP IgA 5 years ago which returned to normal when I changed brands of gluten free flour. All 4 celiac antibodies were positive 13 years ago but I didn’t h...
  11. RMJ
    Celiac testing often includes looking at total IgA levels, because if someone is deficient the IgA tests for celiac disease may not be accurate (false negatives). Did her doctors say anything about how much gluten she should consume? If you change that it could affect her next test results.
  12. RMJ
    Can the rest of your household eat the food with gluten instead of getting rid of it? Can you create one shelf, or partial shelf, for your new food in the pantry, in the fridge and in the cabinets as a start? My husband is not gluten free so we each have a cabinet, and separate shelves in the fridge. If we have to share space the gluten free foods...
  13. RMJ
    Dixonpete, I thought of you when I saw this article, although it may not have anything new for you. Worm inspired treatments inch towards the clinic
  14. RMJ
    I can’t imagine eating 4-6 slices of bread per day, either. You just need wheat, it doesn’t have to be bread and it doesn’t have to whole wheat. If a piece of cake or a doughnut is about the same size as a slice of bread it’s probably roughly equivalent. Or you could do what Trents suggests and just buy powdered gluten. Gliadin X can help by “digest...
  15. RMJ
    Damage with silent celiac exists. I am a silent celiac. I was tested because I have the gene predisposing to celiac disease and migraines. All of my antibodies were high (TTG IgA, TTG IgG, DGP IgA, DGP IGG, EMA). I had a biopsy which showed damage. After going gluten free I felt better overall and have more energy. Unfortunately it didn’t help the migraines. ...
  16. RMJ
    I had an endoscopy where there was no visible damage but biopsies showed damage. I even asked beforehand if the endoscope had good enough magnification to see the villi! I hope you get a clear answer from the biopsies.
  17. RMJ
    Antibodies to Deamidated gliadin peptides. It is another celiac antibody test. The main test is the one you had, TTG, But a full panel will also include DGP IgA and IgG. I was positive on all of them!
  18. RMJ
    Sometimes it can take a long time for antibodies to get into the normal range. My TTG IgA was normal after a year, but just barely and it bounced in and out of normal range for a few years. It took five years to get the DGP IgA normal. You may want to reevaluate your gluten free diet. I started by not eating anything with gluten ingredients. All antibodies...
  19. RMJ
    Yes, it would make sense to go mostly gluten free, since it gives your troubles.
  20. RMJ
    Yay for the normal biopsy! Thanks for the follow up. Were you eating gluten prior to the endoscopy?
  21. RMJ
    I don’t know how common it is, but it happens. Total IgA going up is not necessarily celiac related. The body can make IgA antibodies against all sort of things. But if I understand correctly that until recently you haven’t had a celiac blood test since diagnosis, how do you know that your recent blood tests are a mild rise, vs never going down to ...
  22. RMJ
    Do you have any other results from either of the two labs where you’ve been tested recently? If so, are the newest results from that lab elevated over previous results? It took me 5 years to get all of my antibodies into the normal range. Then 3 years later one went up into the positive range. I realized that I had started baking with a different b...
  23. RMJ
    In testing for celiac disease total IgA is run just to be sure you’re not deficient (in which case the TTG IgA results would not be reliable). Different labs may have slightly different normal ranges, but the units are usually the same and the results can be compared. In your case, what is meaningful for celiac disease is that you were not deficient in t...
  24. RMJ
    Comparing results with different units can be very difficult, or impossible. What are the normal ranges for each result?
  25. RMJ
    Not all of King Arthur’s gluten free flours and baking mixes are certified gluten free. This bread flour is not.
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