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RMJ

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Everything posted by RMJ

  1. RMJ
    Most of the studies in the literature are usually trying to see how short a gluten challenge can be, so they don’t look for what you’re interested in. Here is a paper that does look at 2 weeks vs 4 weeks of gluten challenge and it certainly hasn’t leveled off by 4 weeks (see figure 2). The figure only shows the average results. The ranges listed in th...
  2. RMJ
    Before I had an endoscopy (delayed for unrelated reasons) the diagnosis in my medical record was “abnormal celiac antibody panel.” Would a formal diagnosis like that be enough for a school to take it seriously? (They probably wouldn’t even know what it meant).
  3. RMJ
    Paris has several wonderful gluten free bakeries. I don’t particularly like croissants so don’t remember if they had them, but I had a wonderful eclair.
  4. RMJ
    No I can’t cheat. It would be like a booster shot, increasing the damaging antibodies again.
  5. RMJ
    Good question. Because gluten is still making my body damage itself, even if I don’t feel the damage. It is an autoimmune disease meaning I have antibodies against my own tissues. My endoscopy showed damage in my intestines.
  6. RMJ
    There are many possible symptoms for celiac disease but some people have celiac disease without any of the usual symptoms - it is called silent celiac disease. That is what I have. I was tested because I have the genetic markers and migraine headaches. What I’m trying to say is, just because your symptoms are different from your friend does not mean y...
  7. RMJ
    Does he eat oats? Some with celiac disease react even to gluten free oats because of the avenin protein.
  8. RMJ
    Here are four medical journal articles that outline how to diagnose celiac disease. They all recommend duodenal (NOT colon) biopsies after a positive TTG test. The American College of Gastroenterology guidelines say that the gene test isn’t terribly useful. Perhaps you could ask your doctor why she won’t refer you for an endoscopy when that is the...
  9. RMJ
    I haven’t read of any scientists doing this experiment with gluten in celiac patients (probably unethical) so I can only make an educated guess based on general immunology knowledge and my experience being responsible for antibody production in rabbits (for use in medical diagnostic tests). For a while, introducing more of an antigen will make the a...
  10. RMJ
    You absolutely need a different doctor. The standard of care is to do an endoscopy to follow up a positive TTG or DGP test. Colonoscopies are NOT used to diagnose celiac disease.
  11. RMJ
    Can you get a second opinion from another gastroenterologist? Your second test is also positive on deamidated Gliadin IgG, so two positives. Some people with celiac disease are positive on all four tests (me), some are only positive on one.
  12. RMJ
    It is great that your future in-laws took such good care of you. We get too many posts here from people whose families don’t believe their celiac diagnosis, try to get them to eat “just a little gluten,” etc. This was probably all very new for your fiance’s family. I would guess that next time they serve you gluten free food they won’t talk about it ...
  13. RMJ
    I looked in a great gluten free cookbook (from America’s Test Kitchen) which explains why they put in the ingredients they do. Here are some reasons they have for using almond flour in baking recipes: Less starchy. More “chew”. Add richness without greasiness (gluten free flours sometimes don’t absorb the fats as well as wheat flour)....
  14. RMJ
    You’ve probably already checked, but any chance one of the “Many new meds” has gluten in it?
  15. RMJ
    The item that worries me the most in your list is people baking with flour in a shared kitchen. Flour can easily become airborne and contaminate things.
  16. RMJ
    That actually sounds like a smart doctor! Some would just say “not celiac” and not give you any more assistance. You might try having her go completely gluten free and see if the antibody levels return to normal levels.
  17. RMJ
    It is difficult to tell exactly which celiac tests were done. tTG/DGP does include both types of tests, but it doesn’t say whether it was IgA or IgG and doesn’t give numbers so one can’t tell if it is very negative or just under the cutoff for positive. Saccharomyces is a type of yeast, and having antibodies to it as you do is a possible indicator of in...
  18. RMJ
    You can live as someone with celiac disease without a biopsy. I’d just tell future doctors I had celiac disease and wouldn’t even mention how it was diagnosed unless asked. I didn’t have a biopsy at first due to unrelated medical reasons. At first my diagnosis was just “elevated celiac antibodies.” Eventually my gastroenterologist said I had cel...
  19. RMJ
    Maybe the typo was in your results and they meant 1:5 instead of 1:50. A lot of labs use above 1:5 as the cutoff. That would make sense. It would also fit with your TTG results which are also way above the cutoff. I hope you get a clearcut answer from your endoscopy biopsies.
  20. RMJ
    EMA = endomysial antigen. This was the original blood test for celiac disease. (It is done with tissue, not an agglutination assay). Serum is diluted and put onto a microscope slide with endomysial tissue - a type of connective tissue. Then other solutions are added so that IgA antibodies binding to the tissue can be detected under a microscope. Titer...
  21. RMJ
    Were the tests run at the same lab? Unlike most lab tests, celiac numbers can’t be compared from tests made by different manufacturers because of how the units of measurement are set. This must be frustrating! I’m glad that you at least feel better.
  22. RMJ
    Equipment used for pharmaceutical manufacturing of more than one product has to be VERY thoroughly cleaned between products - to avoid contamination with the previous active ingredient. The cleaning methods have to be thoroughly evaluated before use. I would think the risk of gluten contamination of pills/caps from shared equipment would be very low. There...
  23. RMJ
    Here are the inactive ingredients. None of these should contain gluten. You would need to ask the manufacturer if there is any risk of contamination. In the unlikely event that there was contamination, the amount you might ingest from a small capsule would be very, very tiny. SILICON DIOXIDE (UNII: ETJ7Z6XBU4) CETOSTEARYL ALCOHOL (UNII: 2DMT...
  24. RMJ
    Have you had repeat celiac antibody bloodwork to see if antibodies are normal or still elevated? Perhaps your intestines are still damaged and you still aren’t absorbing calories well - especially if you’ve cheated a few times. Bloodwork would be an indirect way to evaluate that, but sometimes antibody levels return to normal before full intestinal healing. ...
  25. RMJ
    Here are some ideas: When should I have follow up celiac blood tests. Should I be tested for nutrient deficiencies. Should I have a bone density test. How long might it take for my gut to heal enough to take care of my anemia.
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