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RMJ

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Everything posted by RMJ

  1. RMJ
    My DGP antibodies decreased but remained stubbornly in the positive range until I tried the Fasano diet. I know it comes up regularly in the forums but I don’t know if there is a specific thread on it. The reason for waiting 4 weeks is to allow the villi to heal, since the enzyme that digests lactose is from the tips of the villi. After 3 months i...
  2. RMJ
    Not everyone is positive on the tTG test. Some are only positive on the DGP test (deamidated gliadin peptides). She might still have celiac, or it might be non celiac gluten sensitivity.
  3. RMJ
    I’m not sure what you mean by “her IgA is within normal range.” Is that total IgA, TTG IgA or DGP IgA? Were there any IgG tests? p.s. your English is fine!
  4. RMJ
    I used to develop tests like this. To develop a celiac blood test you take blood samples from a bunch of people with biopsy-diagnosed disease, and a bunch of samples from people without celiac. You run the test on all of them. Then you figure out where to make the healthy/celiac cutoff so that you get the right answer (matches biopsy) most of the time. ...
  5. RMJ
    Thanks, I will have to try these.
  6. RMJ
    OD stands for optical density. When the test is run it is evaluated in a machine which reads a color and gives results in OD units. Most blood tests have absolute units such as mg per deciliter, a weight per volume of blood. Celiac tests are not standardized. The units are arbitrary based on the machine used to read it. Thus each manufacturer has their...
  7. RMJ
    I’m curious, what is the purpose of soaking in water?
  8. RMJ
    You could try the gluten free diet and see if the antibody levels go down, that would certainly indicate that they were related to gluten in your diet.
  9. RMJ
    Hives that respond to an antihistamine are from IgE antibodies, whereas celiac is IgG or IgA. One can respond to wheat with all types of antibodies - you might have an allergy plus celiac.
  10. RMJ
    I contacted the Sensodyne manufacturer two years ago. This is what they said: Thank you for your enquiry regarding presence of gluten and related products in Sensodyne and Pronamel range of oral products. Sensodyne and Pronamel range of oral products do not contain gluten as an ingredient either in the raw materials or in the list of ingredients used...
  11. RMJ
    Don’t know where you will be going in CA, but here are some chains I trust: Asian Box, completely gluten free. California Pizza Kitchen, has limited selections of certified gluten free pizza with their methods certified by the Gluten Intolerance Group. The Melting Pot, a fondue restaurant for a fancier meal, gluten free procedures certified b...
  12. RMJ
    If the biopsy is negative or inconclusive you could see if your antibody levels go down on a gluten free diet. That would be an indication that your body attacks itself when you eat gluten.
  13. RMJ
    Drug manufacturers cannot change their ingredients easily, a new formula would require new FDA approvals. They can easily change suppliers of most ingredients.
  14. RMJ
    After you’ve been on the gluten free diet for 6 to 12 months you could have the antibodies retested. If they go down that would mean your GI has the right idea!
  15. RMJ
    I was diagnosed and started a gluten free diet almost six (6) years ago. I had no obvious symptoms, but high positives on TTG IgA and IgG, EMA, and DGP IgA and IgG. Most came down to normal in about a year; the DGP IgA was lower but still high. Finally, after almost six years, DGP IgA is in the normal range for the first time! Just barely, 18 when normal...
  16. RMJ
    It is so frustrating that so many in the medical field know so little about celiac disease! After you have been on the gluten free diet for 6 to 12 months perhaps your new GI can order the antibody tests again to see if the levels have gone down. Lower antibodies on a gluten free diet would point towards celiac disease.
  17. RMJ
    You don’t have to have positives on all the tests to have celiac. Those values would likely go up if you were eating more gluten. I don’t know if a capsule endoscopy can detect celiac or not. The magnification might not be high enough. A good question for the gastroenterologist.
  18. RMJ
    Here is one book by a medical professional. Dr. Crowe is the current president of the American Gastroenterological Association and my doctor. Open Original Shared Link Here is another one, Dr. Fasano is another well-respected expert in celiac. Open Original Shared Link
  19. RMJ
    My exact question to them was asking if it was grown on wheat or corn. Their answer was that it was “wheat based”.
  20. RMJ
    I contacted a manufacturer of xanthan gum (LorAnn) and was told theirs is wheat based. Other manufacturers may be different.
  21. RMJ
    You have one positive result, the TTg IgA. That is all it takes to have celiac. Hopefully you will be referred to a gastroenterologist for an endoscopy and biopsy to confirm - lab tests are occasionally wrong. Continue to eat gluten until all testing is complete.
  22. RMJ
    Purple fingernail beds and fatigue can have other causes besides anemia. You may want to get checked out by a doctor to see if you truly have anemia or if something else is going on.
  23. RMJ
    If you really want to be sure you’re eating plenty of gluten prior to testing, you can buy wheat gluten flour. It is mainly protein. I’m not sure how you would use it, however...
  24. RMJ
    Could you call the company and see if they use shared equipment? And if so, how they assure that it is clean enough before use for non-gluten free products? With the gluten-free certification I wouldn’t be concerned about a shared facility. I would want to know how they handle shared equipment, if any.
  25. RMJ
    What about wrapping something in a corn tortilla?
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