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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
    Food intolerances are common when you have celiac disease. Some resolve and some never do. I still can not tolerate garlic, onions or hot peppers, but I got lactose (dairy) back! A repeat endoscopy revealed healthy villi after being gluten free for five years. However, it revealed chronic autoimmune gastritis. ? Not everything can be blamed on celiac...
  2. cyclinglady
    Welcome! You are in a difficult position. Some celiacs do tests oddly (me...I test positive to ONLY the DGP IgA), some celiacs are IgA deficient and that can impact test results, and some celiacs are seronegative. It is why the biopsy (obtained via endoscopy) is still the best way to diagnose celiac disease. Unfortunately, it is invasive and...
  3. cyclinglady
    This is excellent advice. Many people with non-responsive celiac disease who have been misdiagnosed with refractory celiac disease have responded on this very strict gluten free diet. Definitely worth trying. Many of us here refer to it as the Fasano diet, named after Dr. Fasano, one of the leading celiac disease researchers. https://res.mdpi...
  4. cyclinglady
    The tests are EMA, DGP and TTG. All three have both IgA and IgG versions, though the EMA IgG is rarely ordered even in those who are IgA deficient. But...discuss with the GI. Get hubby tested. Celiac disease is definitely genetic (proven). His diagnosis could help many family members. Let him know that he might get dairy back (I did). That...
  5. cyclinglady
    I had NO GI symptoms when I was diagnosed. I presented with anemia. My biopsies revealed severe intestinal damage. Not all celiacs have violent gastro reactions to gluten exposures. I do not get this. You were diagnosed with severe celiac disease, but your blood tests (never taken) and biopsies were normal. You said that you had villi damage. ...
  6. cyclinglady
    A few months into the diet is not enough time. It can take over a year for antibodies to come down. Why? The learning curve for the gluten-free is steep. It does sound like you are being exposed to gluten instead of your other autoimmune causing elevated numbers. As Tessa suggested a Whole Foods diet (no processed, even certified gluten free), no eating...
  7. cyclinglady
    You have some positives (though weak), so you should move forward and see a Gastroenterologist for an endoscopy to obtain intestinal biopsies to help determine a diagnosis. Keep eating gluten daily until all testing is complete.
  8. cyclinglady
    It takes time for antibodies to get circulated into the bloodstream. When a person has been gluten free and wishes to get tested, doctors recommend 8 to 12 weeks of consuming gluten daily. Your one exposure to an ice cream sandwich is not going to hit for a while and you might need to have repeated exposures. The TTG test was designed to help diagnose...
  9. cyclinglady
    I would like to add that if my GI had followed the American GI Association guidelines or many other algorithms (like you linked and I also share those links), my diagnosis would not have been caught. I am not IgA deficient, yet I have NEVER (I am tested annually) had a positive on the TTG or EMA. I only test positive to the DGP IgA. I am biopsy confirmed...
  10. cyclinglady
    Not long ago, oats were not recommended for celiacs due to issues with crosstamination in growing, harvesting, etc. also there are some celiacs who react to oats no matter what. Might you be one of those? Who knows? Consider eliminating oats for the first six months. Once healed, you can experiment. Try to stick with purity grown oats and not...
  11. cyclinglady
    According to the Gluten Free Watchdog there can be issues with even certified gluten free lentils: https://www.glutenfreewatchdog.org/news/general-product-warning-check-your-lentils-including-certified-gluten-free-lentils-for-foreign-grain/ Like beans, I prefer to wash and sort carefully and cook them from scratch.
  12. cyclinglady
    Here is a link to their website. It does say the ice cream may not be gluten free due to cross contamination in the factory. We eat Breyers because it is actually labeled gluten free.
  13. cyclinglady
    Are you sure those oats are gluten free? https://www.glutenfreewatchdog.org/news/oats-and-the-gluten-free-diet-qa-part-1/
  14. cyclinglady
    What did the GI advise? Did he tell you to go on a gluten-free diet and then retest in three or six months to see if the TTG comes down? What about adding the EMA or DGP antibodies tests? It is easy to miss damaged areas of the small intestine. It is larger than a tennis court! One month of abdominal pain? Maybe he is just developing celiac disease...
  15. cyclinglady
    It takes weeks or months for the gut to heal or the immune system to calm down. You also have to factor in the steep learning curve of the gluten free diet. So, it is still early in the game. Give yourself more time. My kid does not have celiac disease. I make sure she gets her gluten fix when we are out, when she is visiting with friends or while...
  16. cyclinglady
    Good for you for trialing the Gluten Free diet and follow up with testing. Consider asking for a complete thyroid panel, including thyroid antibodies. Your TSH is is just our of range, but some doctors would argue that. I do best with a TSH closer to 1. I have Hashimoto’s which is an autoimmune thyroid problem just like celiac disease is autoimmune. ...
  17. cyclinglady
    I had issues last year. My antibodies were elevated. I was not getting well even after trialing the Fasano diet. A repeat endoscopy revealed a healed small intestine, but chronic autoimmune gastritis. That was the source of my issues. Not everything is related to celiac disease.
  18. cyclinglady
    Save your money on food intolerance testing. Read this article that was just released from the University of Chicago: http://www.cureceliacdisease.org/wp-content/uploads/CdC_Newsletter_2018_IssueTwo_v4.pdf Instead keep a food journal. Many celiacs are often temporarily lactose intolerant (unless you have the genetic tendency), so you could give...
  19. cyclinglady
    There is a reason there are still several antibodies tests for celiac disease. None are perfect. For a while, the TTG was considered superior. In fact many diagnostic algorithms recommend started with just the TTG IgA and an IgA deficiency test. Those two tests catch most celiacs and it is cost efficient. Even the University of Chicago’s previous website r...
  20. cyclinglady
    It sounds like you are ALL doing a great job of keeping him gluten free. I assume that he did have elevated antibodies, intestinal damage and symptoms at the time he was diagnosed. I assume is is thriving. After five years, I had a repeat endoscopy. Like your son, my results revealed healthy villi. Good news, indeed! Once a celiac, always...
  21. cyclinglady
    Maybe there is a fine balance with iodine in your diet. You definitely need in your diet and you can not live without it. What dairy were you consuming? Iodine levels can vary with dairy products. https://celiac.org/blog/2015/10/dermatitis-herpetiformis-and-iodine-exposure/ Have you read all the DH threads? My advice might not be as applicable...
  22. cyclinglady
    How many biopsies were taken during the endoscopy? Most doctors take more than four. What did the pathologist’s report indicate? The small intestine is vast (bigger than a tennis court) so it is easy to miss damaged patches. I can tell you that I only was positive on the DGP IgA tests. Even on follow-up tests. It only takes one positive on t...
  23. cyclinglady
    The TTG IgA and the Immunoglobulin A is most often ordered as it catches almost all celiacs. There some who are Immunoglobulin A (IgA) deficient. A very low result could impact your TTG IgA tests. If the TTG IgA test is negative, you should ask for the rest of the panel, but you are getting an endoscopy and he is checking for celiac disease. You are...
  24. cyclinglady
    Cipro, a fluoroquinolone, has a black box warning from the FDA. Make sure you weigh all the risks and benefits of this particular antibiotic. I hope you feel better soon!
  25. cyclinglady
    Trial the gluten-free diet as recommended by the Ped GI. Babies often do not get positives on the antibodies tests because they have not developed them yet. I recall age three being a good age to test. But your baby is sick. I would do the diet now. Get the entire family on the diet. It makes it easier, though a shared kitchen is doable. He might...
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