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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
    Well...I have not come across a wheat sealed bag yet. I think that is a internet myth, but I could be wrong. This author writes about teas. She has DH/celiac. https://www.verywell.com/is-tea-gluten-free-562355 The OP should be wary if she can not communicate well with her hostess and she can not see the original packaging for herself.
  2. cyclinglady
    I knew that barley tea was popular in Japan (worked for a Japanese company), and I just assumed it would be popular in China too. Thanks for sharing your knowledge of teas! Makes me want a cup right now! ?
  3. cyclinglady
    I am sorry that you are struggling with this! With a family history of celiac disease, you have a strong chance of being celiac yourself. All celiac testing requires you to be on a gluten diet for 8 to 12 weeks. So, you seem to have two choices. Go back on gluten for that period of time and push for celiac testing or remain gluten free for life. Healing...
  4. cyclinglady
    Friendlys? Just be careful. Cross contamination is the risk here or any ice cream shop. To be safe, ask for a them to use a clean scooper and to use a fresh tub of ice cream. Always confirm that the items are gluten free. Managers can run to the grocery store if they run out of their own products. So that fudge sauce (or whatever) might not be gluten...
  5. cyclinglady
    Congrats! So happy for you. ?
  6. cyclinglady
    ?
  7. cyclinglady
    Gluten free oats are safe for the vast majority of celiacs. The issue now seems to be the purity of the oats. Are they grown in dedicated fields or grown in or near wheat fields and then mechanically sorted? Are they tested? This is discussed on the Gluten Free Watchdog site which anyone can access. You know, some big companies have invested a...
  8. cyclinglady
    Yes, you can have celiac disease at the end of the small intestine within reach of the scope from a colonoscopy. I would ask for a celiac blood panel definitely because villi damage get can occur from several things other than celiac disease.
  9. cyclinglady
    In as little as two weeks, antibodies can return to normal for some on a gluten free diet. Learn more about a gluten challenge here: http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ You could attempt testing, but make sure your doctor is aware that you could get a negative on the test and if he is willing to re-run it (could be...
  10. cyclinglady
    AWOL....did they even take intestinal biopsies? My visual looked good per my GI, but my biopsies revealed a Marsh Stage IIIB.
  11. cyclinglady
    Sorry, I missed your posting. I think Ennis answered it well on your second posting. Tea is normally gluten free, but can get cross contaminated. Plain brands like Lipton are fine. To be extra safe, consider a Gluten free certified brand like Republic of Tea. Chinese tea. I would be very wary. First, some Chinese tea contains barley which is...
  12. cyclinglady
    I am sorry that you are struggling with this. Yes, you can have positives on the celiac panel and a negative biopsy. The intestinal tract is vast. Bigger than a tennis court! It can be easy to miss areas of damage. This is one reason why experts recommend more than four samples from a various locations. You could have had a false positive on the blood...
  13. cyclinglady
    Congratulations! Take everyones advice and ask your doctor for a nutritional deficiency work up. My GI offers me one on every annual visit. In the meantime, consider a good multi-vitamin that is gluten free. For extra insurance (for less worries and until you have time to research other brands), Country Life is certified gluten-free. Ask your doctor...
  14. cyclinglady
    I had the biopsy because 1) it complied with what the majority of celiac experts and GIs recommend and 2) (this is a biggie....) I needed to know WITHOUT A DOUBT that I had celiac disease because I knew (having lived with my gluten-free hubby for a decade) what it meant, and 3) it gave me a baseline and ruled out other issues (e.g. H. Pylori, ulcers, etc...
  15. cyclinglady
    Ennis, I can see why you are super cautious. There is no need to apologize for it. You have figured out ways to keep you safe and that is okay! Our house is 100% gluten free. It is so nice to not worry about gluten while at home. A shared household can work for many, but not all celiacs. My folks have a family lake house. It is always...
  16. cyclinglady
    My hubby has been gluten free since our kid was born 16 years ago. I was in charge of the kitchen, so I had control. When I was diagnosed, we went 100% gluten free. My daughter wanted to help in the kitchen and cook on her own. I just could not trust her to keep us safe. She was just a kid! She eats gluten at school and away from home. Our friends...
  17. cyclinglady
    Welcome to the forum. The tests that you were given might be the older tests no longer in use (rarely) in the US. Were you on a gluten diet at the time of testing? Here are the current celiac tests. Note you should make sure that an IgA deficiency test is also run as it will insure the celiac tests (IgA versions are accurate): http://www.cureceliacdisease...
  18. cyclinglady
    Two years since your diagnosis? Have you had celiac follow-up testing? This would help rule out gluten as the culprit. http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/
  19. cyclinglady
    My suggestion is to first rule out a celiac flare-up. It sounds like you are still getting gluten into your diet (eating out, washing your dishes with bleach is fine for killing germs, but not removing gluten). If you do not have a dishwasher, use a separate sponge and dedicate plates and other utensils just for you. A few gluten exposures can activate...
  20. cyclinglady
    I agree with Karen. It sounds like you checked a Greek restaurant to find out how they prepare food, but you are going to different one to eat. Recipes and food handling can vary even among chains. Have you found the restaurant in Toronto in "Find Me Gluten Free"? We try only those that are recommended by celiacs. Even then, you should always weigh...
  21. cyclinglady
    I am sorry that your experience was so awful. W e have been on Carnival and had a successful trip -- no glutenings! Royal Caribbean was terrific too (several times). We took extra precautions though. 1. We notified the cruise line when we booked the tickets and confirmed again just prior to departure. 2. When boarding the first day, usually...
  22. cyclinglady
    The TTG, if mildly elevated, can be related to another autoimmune disorder. If off the charts (very elevated) is is probably related to celiac disease. I would suggest that you ask your doctor to run the complete celiac blood panel (DGP and EMA) in addition to the TTG. Costs a bit more, but worth it. If my GI had just run the TTG, my celiac diagnosis...
  23. cyclinglady
    No. I am sorry I was not clear. Celiac disease is an autoimmune disorder like (similar) Graves or Hashimoto's. If those disorders run in your family, you might discuss it with your doctor. For example, when I was diagnosed with celiac disease, my doctor tested my daughter for celiac disease. He also check her thyroid since we have a very strong family...
  24. cyclinglady
    Welcome! Yes, it appears that your son most likely has celiac disease. The next step is to get a referral to a GI. Have your son continue to eat gluten daily until all testing is complete. Until then learn more about testing and the benefits of an endoscopy (sounds scary, but plenty of parents here were glad they had it done). Of course you should...
  25. cyclinglady
    Thanks for letting me know. I do understand your fears...sort of. My niece is 20 and was recently diagnosed with Crohn's. I could have sworn it was celiac disease, but she tested negative. A pill camera actually helped with her diagnosis as her damage was at the far end of her small intestine out of the reach of both scopes. I can tell you...
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