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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
    Nice to hear that your gluten-free bread turned out well!
  2. cyclinglady
    Ugh! My representative has not signed yet! I will continue to purse him. I know his office got the email. Got back a lame email and a single survey question. Maybe time to hit his local office.
  3. cyclinglady
    Well, you did not get the complete celiac panel. The items missing are the DGP IgA, DGP IgG, and the EMA IgA. For me personally, if my doctor had given me on the TTG tests, my diagnosis would have been missed. You might be like me, you might be a seronegative celiac or you might not have celiac disease. A gluten free diet is not going to cure you if have...
  4. cyclinglady
    I did this a few days ago. Thanks for posting. Please write your rep today!!!!
  5. cyclinglady
    Welcome! First, I am sorry you are dealing with MD. My Dad diagnosed recently but he is in his 80’s. Know that about 10% of celiacs are seronegative (never have positives on the celiac blood test, yet have intestinal damage). You could be IgA deficient. You also only need one positive on the complete celiac panel to move forward to an e...
  6. cyclinglady
    Like you I only had one positive on the panel, yet I had some pretty severe patches of villi damage. I am sorry that you had to wait to see a GI. I completely understand why you would not do a challenge. My own hubby went gluten-free 12 years before my diagnosis based on poor advice from my allergist and his GP. We know gluten makes him sick. To sick...
  7. cyclinglady
    @Maddy1 Consider browsing through the DH section of the forum if you suspect it might be the cause of your head rash and since you have celiac disease. I think you will find that those with DH who have successfully treated their DH are SUPER careful. It seems that 20 ppm threshold might be too much for them (it can be too much for many celiacs without DH...
  8. cyclinglady
    When was the last time you saw your doctors for celiac disease follow-up care? They can help determine whether or not your celiac disease is actively flaring/simmering. http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/ Cross contamination is huge. https://www.beyondceliac.org/gluten-free-diet/cross-contact...
  9. cyclinglady
    The ANA antibodies could be falsely elevated if you have undiagnosed celiac disease or you could have an autoimmune disorder like lupus. Perhaps this elevated ANA will help you get a referral to a GI.
  10. cyclinglady
    You can if washed in a dishwasher. However, if you are hand washing, then I would advise washing items separately and use a different dishcloth or sponge. Here is more information about cross contamination for avoiding gluten: https://www.beyondceliac.org/gluten-free-diet/cross-contact/
  11. cyclinglady
    I do not have Crohn’s, but my niece does. It sounds like your Crohn’s could be still flaring/simmering. It can affect joints and causes fatigue like so many other autoimmune disorders (AI). I know you are feeling better gut wise, but maybe Crohn’s is the root cause of your current issues (you are still anemic and low on Vitamin D). From what I have read,...
  12. cyclinglady
    Anyone see this article? Could explain lingering problems for celiacs. https://www.sciencedaily.com/releases/2019/02/190214100033.htm “Our new study suggests that even though short-term symptoms, such as diarrhea and abdominal pain, can be alleviated by removing gluten from the diet, long-term implications may remain, because 'tissue-healing' ...
  13. cyclinglady
    I do not have Crohn’s, but my niece does. It sounds like your Crohn’s could be still flaring/simmering. It can affect joints and causes fatigue like so many other autoimmune disorders (AI). I know you are feeling better gut wise, but maybe Crohn’s is the root cause of your current issues (you are still anemic and low on Vitamin D). From what I have read,...
  14. cyclinglady
    You had a positive on the celiac panel and that warrants seeing a Gastroenterologist.
  15. cyclinglady
    Consider going gluten free. Well......even grain free. There is a diet called the Autoimmune Paleo Diet that has been around for a few years. You go on a super strict diet for a few weeks and then add foods back in. Basically it does not encourage processed foods. Many people have had success with this diet. So, Scripps In San Diego did a tiny study...
  16. cyclinglady
    How were you diagnosed with IBS? Were things things like SIBO, Crohn’s and Ulcerative Colitis were ruled out via testing and scopes? Personally I balk at the IBS diagnosis. I call it “I Be Stumped”. I got that diagnosis years ago when I had GI issues. Later those resolved (but never my anemia). Celiac disease is like a chameleon — symptoms can change....
  17. cyclinglady
    I think you need to ask the chef at Chili’s. He would know the ingredients. Do not depend on waitstaff (no offense, as I was once one), because they don’t really know what is safe or not. The greatest concern is cross contamination. I am not sure Chili’s is know for being safe for celiacs in my area. It is not posted on Find Me Gluten Free as being...
  18. cyclinglady
    Have you been tested for wheat allergy (IgE response) or EOE? https://apfed.org/about-ead/egids/eoe/
  19. cyclinglady
    Have you ever had an MRI? How is your spine? A compression fracture can cause traveling nerve pain (like sciatica). I had lots of numbness due to compression fractures (osteoporosis) due to undiagnosed celiac disease. My pain and numbness eventually went away but can reappear when I use my back incorrectly.
  20. cyclinglady
    Can not wear a hat? I limit my hat use by using a pretty umbrella when walking to pick up school children or watch a game. Hubby will use a manly golf umbrella to keep cool or allow two people some shade. Consider umbrellas (if your exercise is low impact) to help off set when you need to wear a hat.
  21. cyclinglady
    Here is some bad news. The celiac blood tests were designed to help diagnosis celiac disease, but not to monitor dietary compliance. Still, they are the “only non-evasive tool in the tool box”, so many doctors use them after diagnosis. Take the advice you have been given, and see if your symptoms improve. If not, you might need to see your doctor. Y...
  22. cyclinglady
    Glad to hear from you, Gemini! ?
  23. cyclinglady
    Maybe you should call. Some doctors get behind on paperwork and that can delay postings to portals (all depends on your healthcare practice). Some doctors actually forget to call you. That is what happened to me. After two weeks (I went gluten free after my scope because it was obvious that I had a gluten problem after binding on gluten while waiting...
  24. cyclinglady
    My stomach/duodenum actually will be visibly larger probably due to inflammation. If I bend forward, I can feel a pinching and often it takes my breath away. It sounds like your celiac disease maybe flaring. ?
  25. cyclinglady
    I am sorry that your doctor is not celiac-savvy. Glad to find another celiac who still (despite a healed small intestine) can not tolerate onion or garlic! I am also grain free because I feel better avoiding all grains and it helps to constellations my blood sugar. Socially, I have joined groups that do not require eating. I picked up my old...
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