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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
    His symptoms certainly could be due to celiac disease. The problem is that many autoimmune disorder symptoms and other illnesses can often overlap. He already has one — Raynauds. Our daughter has it. Sunny Southern California and she wears wool socks year round. Blue fingers are a bit disconcerting!
  2. cyclinglady
    I understand your frustration. While I am formally diagnosed (five years ago), my hubby went Gluten Free per the poor advice of his GP some 17 years ago. The gluten-free diet worked. There is no doubt that gluten makes him sick, but he wishes he had a formal diagnosis. He says I have received way more support from family and medical. There is no way...
  3. cyclinglady
    Welcome! Unfortunately, you have to be on a full gluten diet for 8 to 12 weeks for testing (two to four for an endoscopy). Open Original Shared Link The IGA is only used as a control test in the case of celiac disease testing. The result would have to be almost zero for it to indicate that the TTG IgA test is invalid. Your husband is not...
  4. cyclinglady
    Welcome! If you are experiencing some symptoms (and DH might be one of them), I would not start experimenting with oats. Wait until after your visit and when you have been symptom free. Here is testing information: Open Original Shared Link Healing can take time. Do not fret, if your antibodies are still elevated. Remember, you...
  5. cyclinglady
    Consider going to that appointment. See if the doctor is supportive or not. Do not base your first impression on the receptionist. If you choose to stay, mention her rudeness. About bone scans. I should not have used that for an example in my reply to you. I am sure my husband, even if he has celiac disease, has long recovered any bone loss. ...
  6. cyclinglady
    Hi! Did your doctor refer you to a dietitian who is celiac savvy? A local celiac support group? Is he/she aware of your past eating disorder? Are you getting current help for that? It is hard to get a celiac disease diagnosis. You will go through a grieving process just as if you would if a family member or friend died. It is okay to have...
  7. cyclinglady
    Welcome to the forum! Is this “group” a medical center or a celiac support group? What is your goal? To obtain an official diagnosis or get emotional support? I ask because in order to get an official diagnosis, you are going to have to get back on a gluten diet for a period of 8 to 12 weeks. It is called a gluten challenge and it can very dif...
  8. cyclinglady
    Yes, it is normal to react even more violently than prior to your diagnosis. I get some pretty horrible GI symptoms, yet prior to my diagnosis, I had none. Just anemia. In fact, I was was pretty shocked to get my celiac diagnosis. I hope you feel better soon!
  9. cyclinglady
    You are right. It took time to damage your small intestine and will take time to heal it. Don’t forget to factor in the steep learning curve to the gluten free diet. Expect to make a few mistakes along the way and deal with the setbacks. Systemic issues (e.g. nerve issues) can take much l8nger to resolve. Be sure your thyroid is functioning. It i...
  10. cyclinglady
    My grandmother always told me never to have tea or coffee on an empty stomach. She said a few crackers, toast or cookies served with tea helped to avoid an “bilious” stomach. She was a nurse. Sometimes old advice still holds true. ?
  11. cyclinglady
    Two months in is such a short amount of time. I am glad that you are feeling better and seeing progress. It takes time to heal. Expect to feel off (good days and bad) for up to a year or longer based on member comments I have seen over the years. Make sure your diet is rich in proteins, fruit and veggies, etc. Unlike Ennis, I take no supplements...
  12. cyclinglady
    Welcome to the forum! Congratulations on your new baby. I am sorry that you are not well. The only way to know if you have celiac disease is to get tested. Here are the blood tests that check for antibodies, but you HAVE to be on a gluten diet. Do not go gluten free until all testing is done: Open Original Shared Link In the meantime...
  13. cyclinglady
    Welcome! I am glad that your RLS resolved on a gluten free diet. However, a person who has celiac disease should not use any gluten free “enzyme” supplements to resolve or prevent a celiac flare-up per leading celiac experts. Learn more: Open Original Shared Link Of course some celiac or NCGS patents insist that these products work. P...
  14. cyclinglady
    Has EOE been ruled out? https://www.webmd.com/allergies/tc/eosinophilic-esophagitis-topic-overview#1
  15. cyclinglady
    Ah, you do have several things that could be contributing to your elevated antibodies. Because of your comments, I would NOT discount your antibodies tests results. Most likely they are accurate and you are getting continued gluten exposure. Why? You are still symptomatic, live in a gluten house that does not have safe gluten free practices in place,...
  16. cyclinglady
    Welcome! First, do not panic. You are probably doing everything correctly. If not, we’ll find out. In theory, villi damage from celiac disease is supposed to heal within weeks on a gluten free diet. Doctors and scientists believe this because our guts are constantly rebuilding and repairing. In real life, there are many environmental f...
  17. cyclinglady
    Thanks for posting the additional information. I think you have to wait for the pathologist’s report because 1) I am not a doctor and 2) I could be just a crazy cyclist stalking the internet! ?Celiac disease damage can be microscopic. Some GI’s have access to really good scopes and can visually see damage while others (like my old GI) have an old...
  18. cyclinglady
    I can not wait for this product to come to market! Imagine not needing gums to mimic “gluten”. I react to Xanthan gum. I also like the idea of distancing myself from rice products. I am concerned about arsenic levels, especially in commercially sourced gluten-free products where I am not sure where the rice originated. All bets are off if this pro...
  19. cyclinglady
    Hi Sabino! Many celiacs have intolerances to other things like lactose or corn. Most Coke does contain corn syrup. You could be reacting to the other ingredients as well. I can assure you that Coke is gluten free. Consider avoiding it for a while until you feel better and then test. Welcome to the forum!
  20. cyclinglady
    Line the pans with parchment or foil and wash afterwards. Make them wash their hands immediately. Flu is another concern! My kid washes, (we all do), when we return home.
  21. cyclinglady
    I agree! Many of the pieces of the puzzle are missing. 1. You can have both H.Pylori and celiac disease. We are talking stomach vs. small intestine. 2. Where were the biopsies taken? How many? Get the pathologist’s report and the endoscopy report. It is your RIGHT! 3. Ugh! I hope your doctor did not advise you to go gluten f...
  22. cyclinglady
    Get another doctor. Seriously. You can not diagnose a person with celiac disease without diagnostic testing. Symptoms for so many illnesses often overlap. It is impossible. And to commit to a life-long diet without proof or at least exhausting every diagnosis is ridiculous. If your tests were negative (only 10% are seronegative and I would NOT...
  23. cyclinglady
    Hormel chili. Serve on Fries or corn chips. Good luck!
  24. cyclinglady
    Welcome! Yes! It is not common, but it happens. I tested positive on only the Anti-gliadin IGA. The rest of the celiac panel was negative even in follow-up testing. The next step would be to a Gastroenterologist for an endoscopy to obtain biopsies. My biopsies revealed moderate to severe damage. I presented only with anemia.
  25. cyclinglady
    Karen is right. A slight elevation on the TTG IgG could be related to another autoimmune disorder (e.g. Crohn’s, Ulcerative Colitis, Lyme Disease.. anything really). You should consult with a Gastroenterologist. Keep consuming gluten or your tests results (blood, if he runs them again, and/or endoscopy will be invalid). Celiac disease should be e...
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