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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
    I think you can do a search within the forum to determine how to survive a cruise. The first step is notifying the cruise line months prior to departure. Then upon boarding immediately find the head waiter or one of them. Usually the ship has everyone eating at the buffet restaurant for lunch the first day. . I ask for them to get me food from the back...
  2. cyclinglady
    Here is the deal. Celiac Disease is an autoimmune disorder like lupus, RA, or MS. What is good about celiac disease is that the trigger is known -- gluten. My MIL had MS. She had a huge flare up each Spring. Was confined to a wheelchair for those weeks until her flare up calmed down and ceased. Celiac disease is the same, but again, the trigger is known...
  3. cyclinglady
    Have you looked into these autoimmune rashes? https://rarediseases.org/rare-diseases/autoimmune-blistering-diseases/ Really, skin biopsies are needed to diagnose DH, if you have failed the celiac blood panel. You can not judge by visually looking at it. Note that some folks with DH are seronegative.
  4. cyclinglady
    Canyon Bakehouse. I buy it by the case and store in my freezer. The store gives me a case discount. Hubby likes it best. The bagels are good too. But......how long have you been gluten free? I would suggest not eating bread for a while. Given enough time, you forget what gluten bread tastes like.
  5. cyclinglady
    Is there a reason why you want to avoid an endoscopy? Look through the kids section of the forum. You see that the experience the kids had was fine and the parents were glad they did it.
  6. cyclinglady
    Welcome! The answer to your question is.....NO! I am an avid baker. Prior to my diagnosis, I made all my own baked goods, even hamburger buns. The best approach is to not eat gluten-free substitutes until you have forgotten what real bread tastes like! You will eventually produce items that you will think are fine, but to a real gluten eater......
  7. cyclinglady
    I never buy any raw produce that is pre-washed unless I am desperate. Those ready-to-eat salads are constantly being recalled due to bacterial contamination. Besides, they do not last long. So, I save money buying uncut, unprocessed produce. I prefer to wash stuff myself. It is just a "me" thing. Just takes seeing one family member in the hospital...
  8. cyclinglady
    But why buy them pre-sliced? It is difficult to clean mushrooms. I never eat them, because they have always made me sick even when I was eating copious amounts of gluten prior to my diagnosis and gluten did not make me sick (little did I know......). So, I assume it is just an intolerance for me. I get a bad reaction to garlic too and get this...hot...
  9. cyclinglady
    A bit off topic (maybe I should create a post), but I encourage EVERYONE to keep copies of all their records. I changed providers about a year after my celiac disease diagnosis. When I first met my new GI and my PCP, I handed over a copy of my medical file (20 Years with a cover summary page). My new GI saw my antibody and biopsy results. There was NO...
  10. cyclinglady
    Point taken. Anything that is processed is a risk. Anything. Switch brands to see if it helps. I sincerely hope you find a solution.
  11. cyclinglady
    Consider joining The Gluten Free Watchdog. It is like the Consumer Reports of Gluten Testing. She tests all kinds of products for gluten contamination. The very coffee you have been drinking, though not labeled gluten free, tested as gluten free. So, this coffee is safe. I would provide a link, but it requires a subscription. You can see some text discussing...
  12. cyclinglady
    I agree!!! Unfortunately, this bill keeps getting lost in the shuffle in Congress. I am self-employed, am involved with Band boosters, Girl Scouts, have a kid in high school, and am in an Orchestra. I have not time to champion this worthy cause. If you or others have time, please consider helping this bill get passed. We should work towards a solution...
  13. cyclinglady
    Ah, like me and so many others, you are managing two or more autoimmune disorders. It is pretty difficult outside of pharmaceuticals to manage Crohn's. I suspect you have carefully confirmed that drugs you are taking are gluten free. I have recently been dealing with hives. My GI and allergist are not sure of the source, but we are thinking a Mast...
  14. cyclinglady
    Most companies, even drug companies (unfortunately), will not recommend their products for celiacs if they do not test their final product. Ah, those corporate attorneys are always on the watch for product liability. They love issuing a blanket statement like, "Although our products are naturally gluten free or we use no ingredients that contain gluten...
  15. cyclinglady
    We use Republic of Tea. It is certified gluten free, but mostly we love all the Downton Abbey flavors! Makes us feel as if we were in England! We also drink a lot of plain old Lipton too!
  16. cyclinglady
    That is great! It should give you piece of mind.
  17. cyclinglady
    Not sure about how the K cups really work, but is anyone else using the machine? Those with flavors or from other manufacturers could have gluten. I drink coffee without any issues, but just the plain stuff. I think coffee is not on the Fasano diet because it can be harsh on a damaged GI system. Are you consuming oats? About 10% of celiacs...
  18. cyclinglady
    My reactions to gluten exposures have been inconsistent and/or severe with long recovery times. The only way for me to know for sure if gluten is to blame is to get my antibodies measured, which my GI has gladly ordered in the past. I would suggest asking for antibodies testing (celiac) in order to confirm or rule out a gluten exposure the next time you...
  19. cyclinglady
    If I am in a bar and it is super busy, I ask for a "to go" cup. Why? If a dishwasher is not being used (or demand is overwhelming it), bartenders are cleaning all the glasses the old fashioned way ( sinks, wash and rinse with disinfectant). Good for killing bacteria I suppose, but maybe not for removing gluten traces. No bar is going to slow down drink...
  20. cyclinglady
    I think all the flavors are all gluten free. I buy them at my local grocery store which is a Kroger store. Amazon has them too. Jenny at "The Patient Celiac" uses them too (she is a preemie doctor who has celiac disease).
  21. cyclinglady
    Dang! If I lived that close to Chicago, I would definitely go to the University of Chicago's celiac center even just to hang out with some celiacs or celiac-savvy folk! (Maybe visit Aunt Mary too....) Consider a second opinion. Some people spend more on their Friday night bar tab instead of paying for a second opinion (cash) if they went out-of-network...
  22. cyclinglady
    George, i am sorry that you are not feeling well! ☹️ I am not a doctor, but just trying out drugs to stop your symptoms just seems like a band aid approach. It sounds like he suspects IBS which is really, in my opinion, "I be stumped". Has inflammatory bowel disorder (IBD) (more lovely autoimmune disorders) been ruled out? This includes both Cro...
  23. cyclinglady
    Exactly what are your allergy symptoms? Were they IgG or IgE? Allergy testing as a whole is not super accurate -- especially the IgG. Were you on any H1 or H2 antihistamines for the last five days when you were tested? As far as celiac testing, four days without consuming gluten probably would not impact testing.
  24. cyclinglady
    Only GIs can order a complete celiac panel at Kaiser. Your results look negative, but those are just "screening" results. You are not IgA deficient (used only as a control test for celiac disease) so that means the TTG IgA test worked. If you suspect celiac disease, ask for a GI referral. Keep eating gluten!!!! If you go gluten free then all...
  25. cyclinglady
    Welcome to the forum. First, you need to get copies of your celiac test to confirm you actually had it done and what the results were. Second, to confirm a diagnosis, you must obtain biopsies via an endoscopy. Were the doctors gastroenterologists? Third you need to research celiac disease. Yes, you can be asymptomatic, but could still have instestinal...
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