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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
    Too soon for a repeat endoscopy. It takes time to master the diet. Why are your GI s not following Celiac Centers or GI Association’s recommendations? These are just a few: https://www.cureceliacdisease.org/wp-content/uploads/341_CDCFactSheets7_PostDiagnosis.pdf https://celiac.org/about-celiac-disease/treatment-and-follow-up/ You h...
  2. cyclinglady
    Give it a year after ceasing supplementation. Mine was over 2,000 when I was diagnosed 6 years ago. I did not supplement intentionally. I was drinking fortified soy milk because I was lactose intolerant at the time. I was not taking a vitamin b-12 supplement. My last few tests were 872 and 881 and were just within my lab range of 900 (the max)...
  3. cyclinglady
    If you know that you have a corn intolerance, then skip the corn pasta. Is it worth it to trigger a migraine? Get some rice pasta instead.
  4. cyclinglady
    This is article is discusses joint pain as given by Dr. Joseph Murray, a world-renowned celiac disease expert at the Mayo Clinic. https://www.mdedge.com/rheumatology/article/175219/mixed-topics/new-insight-celiac-disease-what-you-should-know Joint pain can be attributed to celiac disease. Not all celiacs have GI issues. Some can be thin or some...
  5. cyclinglady
    Good grief. You have had a very positive celiac disease blood panel (DGP IgA, TTG IGA and EMA) and small intestinal damage. It does not get better than that. Genetic testing helps to rule out celiac disease in unclear cases. Your case is as good as it gets. I never had genetic testing. Why spend the money? I had one positive on the celiac panel and...
  6. cyclinglady
    If getting an endoscopy, you would need to consume gluten daily (1 to 2 slices of bread or equivalent) for two weeks: https://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/ The challenge is much much longer (8 to 12 weeks) when getting the blood test, but you already...
  7. cyclinglady
    Since the American Healthcare Act was implemented, you are no longer penalized for a preexisting medical condition. Believe me, in the old days, my Hashimoto’s was cause for health insurance denial or I paid 30% more (we are self-employed). Now life insurance. That is still an issue!
  8. cyclinglady
    Two weeks off gluten could make a difference in a few people per Dr. Fasano, but I think if you started consuming gluten today, you would be okay in a week or so. It really is hard to be gluten free. The learning curve for the diet is pretty steep. While you might have experienced reduced symptoms, chances are you would still have antibodies in your...
  9. cyclinglady
    Excellent advice from all! I just want to say that things will improve with healing. I have Thalassemia, which is tiny red blood cells. It is genetic, but when my celiac disease was active (undiagnosed), I also had iron deficiency anemia which just compounded my problems. I also had my Gallbladder removed because it was non-functioning (0...
  10. cyclinglady
    If she has celiac disease, I assume the rash is Dermatitis Herpetiformis (DH) which is a celiac-specific rash. Those with DH must be extra careful to avoid gluten. This blistery, intensely itchy, rash can have a mind of its own. Even trace amounts of gluten seem to trigger it. But I am confused. She diagnosed with tummy aches and rash. She...
  11. cyclinglady
    The forum search button is temporarily disabled due to an update. But I found this thread:
  12. cyclinglady
    Wow! A first time poster and you really have to go on the attack? Did you read my earlier post on this subject? Some celiacs are more sensitive than others and flour in the air is a real thing (read my links). But it does sound like you only get salads and not gluten free pizza at pizza joints. Is that correct? Many celiacs are asymptomatic...
  13. cyclinglady
    Just wanted to add that Atlanta has several 100% gluten free restaurants. Worth a weekend drive for a celiac!
  14. cyclinglady
    I do have celiac disease (blood and small intestinal biopsy confirmed). I have healed based on repeat biopsies, which indicates that I understand the gluten free diet. I have been managing the diet in my household for 19 years. I also happen to be a forum moderator, if that lends additional credibility. ? Most mustards are safe. Distilled vinegar...
  15. cyclinglady
    Very strong! Celiac disease is genetic. About 30% of the population carries the genes. But something triggers it because not all those people actually go on to get celiac disease. Experts used to think a 10% chance when you have a first degree relative (brother) but now they think about 48% chance based on a recently Mayo study. Experts suspect a virus...
  16. cyclinglady
    Just know that you have to be on a full gluten diet in order for celiac disease testing to work. It is a simple blood test. Ask your doctor to test you, especially if you have some risk factors: https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220
  17. cyclinglady
    I think you are confused. All the celiac experts say this: https://www.cureceliacdisease.org/faq/is-vinegar-safe-for-those-with-celiac-disease/ https://nationalceliac.org/celiac-disease-questions/is-vinegar-gluten-free/ Please cite the celiac book that says it is not safe.
  18. cyclinglady
    While I was diagnosed with celiac disease six years ago, my husband went gluten free per the advice of my allergist and his GP 20 years ago. His problem? Chronic sinus infections. He has not had in 20 years. Once he gave up gluten, he also realized that he always felt like he had the flu with achy joints and fatigue. He snorted horribly. All that resolve...
  19. cyclinglady
    Koops is certified gluten free. French’s found at Walmart says gluten free on the front label. But really no worries on the vinegar. Distilled vinegar is okay for celiacs like Karen said. It is the malted vinegar (the kind used for Fish and Chips), that you can not have. Bottom line. I have never had a celiac reaction from mustard. If it makes y...
  20. cyclinglady
    My friend lives in very nice Senior Living Home. She told me that a celiac resident has to order food in! And she pays the big bucks to live there. You know there is a craze for the Nomadic life that I follow since I have a little RV. Instead of trying to live off the grid, I am going to have to go from gluten-free dedicated restaurant to gluten...
  21. cyclinglady
    Well, slightly off topic, but I do not use anything but water now. I do intermittent fasting (no breakfast) and I am on a lowish carb diet full of meats, fish, eggs, veggies, dairy and a little fruit. I use plenty of salt. Occasionally, I fall off the wagon like this week when my kid wanted homemade gluten-free cookies. I am not perfect! No longer...
  22. cyclinglady
    Wheat dextrin is highly processed and comes from the starch and not the protein of the wheat kernel. It is gluten free, but I can imagine that it would freak you out seeing it on a label. I felt the same when I saw this in Europe where wheat dextrin is used in gluten-free products. In the US, we usually use corn as the base. (Benefiber is made in France...
  23. cyclinglady
    I just posted this question because the Gluten Free Watch Dog issued a press release in her “News” section, about General Mills. They are a giant food company here in the US and are considering a Gluten Friendly line not for retail but for food service. This would impact hospital food, nursing homes, schools, and restaurants, etc. This food would not...
  24. cyclinglady
    I am sorry that you are struggling with this persistent rash. DH is celiac disease. Celiac disease (which is an autoimmune disease) can attack your small intestine, skin and more recently, your brain. It reaches beyond those three areas and can really affect any body system. A special skin biopsy can be done, but you need to be on gluten for 8 to...
  25. cyclinglady
    Hi! First of all, if you want to pursue testing for celiac disease, you might want to consider changing your doctor at Kaiser. The next hurdle is going back on a full gluten diet for 8 to 12 weeks. But maybe this is not necessary. What were your test results? Were you tested for celiac disease or a gluten allergy (big difference, not to mention...
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