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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
    Glutened six times since July! I am sorry, but that is unacceptable. Each glutening sets off an autoimmune flare-up that can last for weeks or months. I was glutened at the beginning of July. By mid-August my celiac antibodies were higher than when I was diagnosed. Six weeks later! I am diligent about being gluten free. I have been preparing...
  2. cyclinglady
    Two biopsies were not enough! Four to six are recommended and at specific places per the American GI Association. I am not a doctor, but I would say you probably have celiac disease. It is obvious that your GI was clueless!
  3. cyclinglady
    You might find this old thread helpful: I would seriously research the benefits of a gluten free diet. It certainly can not hurt you provided you eat healthy whole foods and not processed gluten-free junk. See if symptoms resolve.
  4. cyclinglady
    Welcome to the forum! Glad to hear that you are in remission. Have you been gluten free since your cancer diagnosis?
  5. cyclinglady
    Did you know, that when spread out, the small intestine is the about the size of a tennis court? It is easy for dcotors to miss damaged areas. Exactly how many biopsies were taken? How long were you gluten free? It can take months to years to recover from celiac disease (one reason is that the gluten-free diet has a steep learning curve).
  6. cyclinglady
    Just wanted to add that you can get the genetic testing done too. If you do not have the celiac genes (maybe your son's came from his father's side), you will not need to ever get the antibodies testing again.
  7. cyclinglady
    Why doesn't your doctor order the rest of the celiac panel? I personally tested negative on the TTG (even on follow-up testing). Only my DGP IGA was positive yet I had a Marsh Stage IIIB (moderate to severe damage). The gluten-free diet is hard to adhere to. It is easier if you can get a firm diagnosis, or at least rule out celiac disease. My main...
  8. cyclinglady
    I read it. It specifically states instant coffee. I am not here to argue about coffee. It is safe for people with celiac disease. Of course, we all know that we have individual intolerances and those need to be identified and addressed in order for us to completely feel well. I did find another research project on PUB MED and one the the authors...
  9. cyclinglady
    Welcome to the forum! A high IGA result can mean tthat you have an autoimmune disorder like lupus or RA. Open Original Shared Link In my case, my IGA result was even higher than yours, but I did not worry as I have Hashimoto's Thyroiditis (besides celiac disease). Your doctor did not run a complete panel. I would recommend the DGP...
  10. cyclinglady
    You might find this of interest: Open Original Shared Link Basically, adhering to a whole foods diet might help.
  11. cyclinglady
    No, continue to be vigilant! I misread all the time. I am usually in a hurry or feeling off/brain fog (should not respond at all but I like to help). Luckily, we have other members who might be having a better day. Off topic. Two bad things. Went camping and missed a thyroid dose. No wonder I needed a nap! Duh! Today we are working on taxes...
  12. cyclinglady
    No, Kalbright is not IGA deficient. Her initial screening was negative based on the information she posted. I just pointed out that her doctor may continue to suspect celiac disease still (we do not know her symptoms). She needs to talk to her doctor. Maybe he can only order the TTG as a PCP or GP. She might need a GI referral. BTW, I am not...
  13. cyclinglady
    The tests he gave you are typically the screening tests. If negative (like yours) but if the doctor still suspects celiac disease, he may order the complete celiac panel or proceed to an endoscopy. Results can be negative if you were on a gluten free diet (or gluten light). You must be consuming gluten daily for 8 to 12 weeks prior to the blood draw. ...
  14. cyclinglady
    My DGP IGA result was the ONLY positive on my blood panel. Yet biopsies revealed a Marsh Stage IIIB (moderate to severe damage. Celiac experts admit it is easy to miss damaged areas during an endoscopy. Everyone else has given excellent advice!
  15. cyclinglady
    Sorry that you got sick!
  16. cyclinglady
    These are the celiac blood tests: Open Original Shared Link Learn more: Open Original Shared Link
  17. cyclinglady
    The genetic test only EXCLUDES celiac disease. About 30% of the poulation carries the "celiac" genes. A positive on the genetic testing will just tell you that you have the ability to develop celiac disease not that you will get it or have it. Antibody testing is usually ordered first to help diagnosis celiac disease.
  18. cyclinglady
    This is my worst nightmare! Forget my kid's college education, I'll need to save for caregivers!
  19. cyclinglady
    He wants to order the TTG IgA after you have been gluten free for years (that's the only missing celiac disease test) and you are not IgA deficient? A positive is a positive. When you get one on the panel, the doctor is to move forward and obtain biopsies via endoscopy. Hopefully, he managed to get four to six samples as it is really easy to miss damaged...
  20. cyclinglady
    Glad to hear the up date! ?
  21. cyclinglady
    Thanks for clarifying! I know that you and Jebby are the MCAS or MCAD experts! ?
  22. cyclinglady
    I just gave conflicting advice regarding a gluten challenge to Dark Angel. Frankly, I would be scared to death to trigger Angioedema if it is affecting her throat in order to get a celiac diagnosis or even samples of mast cells in the GI track. Can she just go for the mast cell diagnosis first and injest wheat/gluten in the doctor's office? Test for celiac...
  23. cyclinglady
    Well, you could have celiac disease, a wheat allergy, or both. Because of your reaction (angioedema) , I would not recommend a gluten challenge for getting a celiac diagnosis. You could be tested for a the wheat allergy though. What does your doctor say? In any case, your best defense might be to remain gluten free for life! Read our Newbie 101 section...
  24. cyclinglady
    Did you already test positive on any part of the celiac blood panel? I ask because in order to get tested for celiac disease, you must be consuming gluten for both the blood tests and the biopsies taken via endoscopy. It sounds like you are on a grain free diet. The anaphylactic reactions....has Mast Cell Activation been ruled out? How do you...
  25. cyclinglady
    We eat Breyers all the time! Never have been glutened. We make sure the little green gluten-free icon is on then package as they do make other ice cream with cookies, etc. Based on their website it should be on a separate line if I recall. What other dairy do you consume? If it is just hard cheese and yogurt, those contain a lot less lactose than...
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