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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
    These two drugs are not listed in the glutenfreedrugs.com list that is one source (see link below). You probably need to call the manufacturer yourself or check their website. Your pharmacy should be able to call for you or at least call their pharm representative. I would ask another pharmacy and stop shopping at this one? Or you could ask your doctor...
  2. cyclinglady
    People have reported headaches and "withdrawal" symptoms. I did not experience it, but with celiac disease, everyone's symptoms are often different. Stay hydrated and rest as much as possible.
  3. cyclinglady
    Maybe you mean malt vinegar? The kind you have with Fish and chips? Malt vinegar is not gluten free and is based on barley. It is fermented instead of distilled. If it were me, I would probably react to the additive Xanthan Gum. Just a personal intolerance of mine. So, I avoid commercially processed dressings. Hubby can consume them without...
  4. cyclinglady
    I agree. We eat only at PF Changs after talking to the manager. The risk for cross contamination is great. I do not think that Celiac disease is well known in Chinese cultures. Another option would be to check the restaurant using the website, "Find Me Gluten Free". Look for celiac votes! I would bring food and order a drink. The goal is to enjoy...
  5. cyclinglady
    Some 30% of the population has the genes that can develop into celiac disease, but that is a very few. Gene testing is best to exclude celiac disease. Somethines doctor's order it because they do not want to do an endoscopy. Genes, positive blood tests and a trial diet helps lead to a diagnosis, but experts since prefer an endoscopy to obtain biopsies...
  6. cyclinglady
    I know, what are the odds? But hubby is not diagnosed formally. He went Gluten Free per the poor advice of my allergist and his PCP. They guessed right. He got well. But now he refuses to do a gluten challenge and I get that! Besides, we like to eat and pay our bills! He would become incapacitated for sure! It is one reason I personally push members...
  7. cyclinglady
    Hubby has been gluten-free for over 16 years now. I was diagnosed just some 4 years ago. I was shocked when I got my diagnosis! We make a great team.
  8. cyclinglady
    It is worth it! I know it can be hard to remain gluten free because you are a silent celiac. It is hard, but it is critical. Untreated celiac disease can lead to other AI issues and cancer (that one is pretty rare, but let's put it out there). But....you know all that. Allergies? Start researching Mast Cell Activation Syndrome which is not a normal...
  9. cyclinglady
    There you have it. Your little canary (mine is my hubby). One of my big glutenings I had were traced to two items that he NEVER ate. The second was while we were traveling and it could have been anything I was served and he did not order and he did not get sick. We'll never really know the glutening source, but the trip was worth it. It was most...
  10. cyclinglady
    Glad your endoscopy is over. Time to heal? Hard to say. Those with celiac disease can take weeks, months or years to recover depending on damage. Neurological issues seem to take the longest to resolve. It also takes time to really get the gluten free diet down. Be sure to read the Newbie 101 tips located (pinned) at the top of the "Coping" section...
  11. cyclinglady
    I am thrilled to hear this news. A nice option when away from home. Now, if Starbucks could develop a chicken wrap like Costa's Coffee (England), we'd be set for lunch!
  12. cyclinglady
    @ironictruth -- in your research, have you ever come across studies about an elevated DGP but consistently negative TTGs? I first thought it was a lab error when I was diagnosed, but even in follow-up testing, my TTG tests are always negative. Only the DGP has been positive (measured twice after two different accidental/cross contamination glutenings)....
  13. cyclinglady
    You are not IgA deficient (256), so that means the other celiac IgA tests will be valid. You got a firm positive on the DGP (like me which was my ONLY positive in the celiac panel). Ha! My lab results said "mildly positive". Your visual on the endoscopy was normal (like me), yet my biopsies revealed moderate to severe (Marsh Stage IIIB) patches of villi...
  14. cyclinglady
    Me. Only one positive on the celiac panel and visually, my GI said everything looked great. My biopsies revealed moderate to severe patches of intestinal damage. You just have to wait for the pathologist's report. The wait is hard! ?
  15. cyclinglady
    Welcome! The bad news is that all celiac tests require you to be on gluten. The blood tests measure antibodies. If you are not injesting antibodies, then none will appear in your blood stream. What kind of allergy testing did you have? If IgG, is not often readily accepted the medical community as there is dispute in the accuracy, but it can be...
  16. cyclinglady
    I live in So Calif. Nice to see a center at UCLA. This group or at least website was not around when I was diagnosed four years ago. The closest celiac center was in San Diego and was affiliated with the Warren celiac research center.
  17. cyclinglady
    I still do not understand. Are you questioning your diagnosis or are you unhappy with the aftercare/management of your celiac disease?
  18. cyclinglady
    It is NOT normal. I speak from experience. Only my DGP IgA was above range and the rest of the celiac panel was negative. My biopsies reveal moderate to severe damage. There is a reason there are several celiac tests. Not all have to be positive -- only one. Even in follow-up testing, I continue to test positive to only the DGP IgA. My GI no longer...
  19. cyclinglady
    The DGP is the only test that was positive for me and my biopsies revealed a Marsh Stage IIIB. I also improved (anemia resolved) on the gluten-free diet. It is now the only test my GI orders for dietary compliance because my TTG is always negative. A few years ago, the University of Chicago (I just like their website because it is easy to understand...
  20. cyclinglady
    You are not crazy! There is something wrong. Keep advocating for your health. I am glad your Mom will be with you.
  21. cyclinglady
    Welcome Tina! This is a pretty old posting so I will respond. What were your other celiac panel results? Did they do the TTG IGA? I had a very elevated IGA test (checked for IGA deficiency which for celiac tests validates the result). It can mean that you have some autoimmune disorder going on. I already had Hashimoto's thyroiditis, so no...
  22. cyclinglady
    Do not worry. Didn't you say you talked to a nurse? She might not even know the procedure for obtaining biopsies for celiac disease. She might just be thinking endoscopy. She might even be new to the practice. Who knows? Print off the U of Chicago's info and call or email tomorrow with your questions. If you do not get an answer, then talk to the GI...
  23. cyclinglady
    I had seven weeks after my positive blood test to consume gluten. (I waited due to work contraints). I ate gluten like a fiend. Bought everything and sample a few and gave away the rest. It was a fond farewell. Even ate a loaf of sourdough bread a day. I kid you not! Anemia was my only symptom. By the end of seven weeks, I had all the classic gut...
  24. cyclinglady
    Call back and confirm. I would even ask the GI on Friday to show the lab order. Intestinal damage is not always seen visually. Your GI should be following leading celiac research center's guidelines like this one: Open Original Shared Link (I often refer to the University of Chicago's website because it is the most well written and easy to nagivate...
  25. cyclinglady
    It takes 7 to 10 days (depending on where you live). My GI told me that everything looked great when he looked (no stomach ulcers, etc), but my biopsies revealed moderate to severe damage. So, you need to wait for the pathologist's report. I know, waiting is hard! And speaking of reports, it is a good idea to maintain all your medical records. Good habit...
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