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cyclinglady

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by cyclinglady

  1. cyclinglady
    No, a NCGI diagnosis is based on a excluding celiac disease. There is no test for it. It may help to have it documented so that you could get more family support if needed. My parents could not believe that I had celiac disease since I had no intestinal symptoms. But they saw my test results and I carry a letter from my GI that simply states that I need...
  2. cyclinglady
    It sounds like it is not in your head. Gluten is a problem for you. My hubby will be the first to say that I have received way more support from medical, family and friends with my diagnosis. But after a year of trialing the gluten-free diet , we knew it worked for him. I had food intolerances and allergies, so we worked around his gluten-free...
  3. cyclinglady
    Depends on what other sauces/flavorings you add. Rice vinegar is fine, but check the Oyster sauce if you use that. Soy sauce contains wheat, but there is a gluten-free soy sauce. Nice for you to offer. As a celiac i would worry about eating at someone's house because cross contamination is a huge problem (wooden spoons, cutting boards, etc.) So, I...
  4. cyclinglady
    If you have been in a gluten free diet for over a year, you should have seen improvement if you have celiac disease or Non-Celiac Gluten Intolerance. I am assuming that you are still having the throat issues? Have you researched Mast Cell Activation Syndrome? It is kind of like an allergy, but not. No cure, but there is some treatment for it. It is...
  5. cyclinglady
    Artsunshire, You are obviously feeling down and that is understandable. I want you to know that a majority of us went undiagnosed for years. The odds of us developing cancer are slim and none. At 25, you can heal. You are one step ahead of me. My bones will never recover because of my age -- 55. You need to find out if you hemoglobin (besides...
  6. cyclinglady
    Most of the current members have not had the gene testing. I did not. So, i have not researched it enough to even attempt to comment on your results. The gene test helps to rule out celiac disease. Some 30% of the population carries the genes, but only a very few (1%) actually go on to develop celiac disease in their lifetime. The gene test does not...
  7. cyclinglady
    I have eaten SPAM without getting glutened. There is a case of it in my garage (earthquake food). Hormel does not test the final product (not certified gluten-free). It is regulated under the USDA not the FDA. The Gluten Free Watchdog (kind of a Consumer Reportsh has tested Hormel canned Tamales and Hormel's bacon pieces and they tested under 5 ppm...
  8. cyclinglady
    This article was just released (12/19/2016) by the Gluten Free Watchdog (a kind of Consumer Reports for the gluten-free community): Open Original Shared Link Your thoughts?
  9. cyclinglady
    Angela had only abdominal pain every few months or so. Painful enough to go to the ER (nothing found) many, many times. Her trigger seemed to be fun events like traveling. Wierd, huh? She did not exhibit any of the typical Crohn's symptoms at all (kind of like me having celiac disease with no gut issues when i was diagnosed). The damage was pretty severe...
  10. cyclinglady
    Those two tests are NOT related to celiac disease. One is for Epstein Barr (Mono) and the other i am not sure. Are you sure you have all the test results? You should maintain records for your entire family for life. A wheat allergy is different from celiac disease. Celiac disease is an autoimmune disorder (AI) like lupus, MS, R. arthritis, thyroiditis...
  11. cyclinglady
    Welcome! Exactly what celiac antibody tests were given? Just the TTG? Toddlers often test better on the DGP celiac test. Her IgA might indicate a deficiency, but for celiac testing i think it is enough to validate any IgA antibody testing. Ask for a complete celiac panel (both IgA and IgG) befor you rule out celiac disease (same goes for you, but...
  12. cyclinglady
    It has been three years since my diagnosis. My symptoms at the time I was diagnosed was anemia (now resolved). I was shocked that my GI (went in for a routine colonoscopy since I am over 50) even suspected celiac disease. My biopsies revealed a Marsh Stage IIIB. I have followed up with antibody celiac blood tests. I do not feel the need for another endoscopy...
  13. cyclinglady
    Did you just get the TTG celiac test? This is a common (first-line) screening test for celiac disease that is cheap and very good. The problem is that not all people (that pesky 5%) will test positive on the TTG. I am one of them. I tested (and still do in follow-up testing when exposed to gluten) positive ONLY to the DGP IgA, yet my biopsies revealed...
  14. cyclinglady
    Exactly what celiac blood tests were taken? A genetic test will only help rule out celiac disease and not diagnose it. Why? Because about 1/3 of the population carries the genes, but only a very few go on to actually develop celiac disease.
  15. cyclinglady
    You stated in previous posts that your celiac blood test was positive. Just a typo in this post?
  16. cyclinglady
    (I am going to pretend that you are my kid.) "Whew! I am so happy that they did not find celiac disease damage. What a relief! I am bummed that we still did not find the root cause of your issues. I know that you are not crazy and you are not feeling well. There must be a reason why your celiac blood test was positive. I am still going to suggest...
  17. cyclinglady
    Hi! You only need ONE positive on the panel for your doctor to order an endoscopy to obtain six or so tissue samples from various parts of the stomach and small intestine. You have a positive! The endoscopy will determine your celiac disease diagnosis, but keep in mind that the small intestine is vast (size of a tennis court) so it is important that your...
  18. cyclinglady
    I would put my money on the Cool Ranch Doritos as the cause of your misery (glutening), but you could be reacting to some of the ingredients in the pizza or even the crackers. My gluten-free hubby does well on both but i still have issues with xanthan gum and the garlic/onion family. Just my own set of personal intolerances. Just purchase the Frito...
  19. cyclinglady
    Hey SSLRunner! Sorry to hear you were glutened. I am sorrier that you are not getting enough family support. Although harder without a diagnosis, remaining gluten-free can be done. My hubby has been gluten free for 15 years. No easy feat. He got a lot of eye-rolling, etc. Family was pretty good about being supportive. My family has lots of allergy...
  20. cyclinglady
    I have not had a repeat endoscopy/biopsies and I am not a doctor, but it appears that your mother is improving. I hope someone is able to answer your specific question. How are your mother's symptoms? Resolved?
  21. cyclinglady
    I can see your concern about frozen veggies from BirdsEye who continues to expand their product lines to include flavored veggies and it has crossed my mind too. I live in CA, the best place for most fresh fruit and vegggies, and we eat with the seasons. But I do buy frozen peas and corn. I wash them off just as i would a fresh veggie before use....
  22. cyclinglady
    Were you diagnosed with celiac disease with both a blood panel (TTG, EMA and DGP) and intestinal biopsies via endoscopy? An IgA deficieny test is often given as a control test for celiac disease. It validates the celiac-related IgA tests (e.g. tTG IgA). If this result is elevated, it can mean that you have autoimmune disorders (IgA very elevated...
  23. cyclinglady
    Perfect! Thanks! So glad to hear that it is working for you!
  24. cyclinglady
    It can take a LONG time for antibodies to come down. According to the GI Association up to five years! Some 30% of celiac disease adults do not heal. Why? Hidden sources of gluten/cross contamination researchers think. Source for the five year statement: Open Original Shared Link I think you need to wait and be patient. If I were you...
  25. cyclinglady
    Nothing is ever easy as you well know. A celiac disease diagnosis can very elusive. I am sorry that you have to wait. At least you had a visual. I had moderate to severe damage that was not visible on my endoscopy. So, you just have to wait for the biopsy results. If negative keep in mind that the small intestine, if stretched-out, is the size...
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