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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
    You can still have Mast Cell Activation issues as well, any other autoimmune disorder or just get sick from a virus. Your symptoms may not all be due to celiac disease. However, focusing on healing from celiac disease should be your first priority. I noticed you mentioned wheat foods. Celiacs react to barley and rye and sometimes oats. It is best...
  2. cyclinglady
    GFinDC gave you good advice. Your symptoms could be celiac disease or one of many autoimmune disorders (you can have multiple autoimmune disorders). If you are unable to get the full celiac disease blood panel or an endoscopy, consider trialing the gluten free diet. You might research the Autoimmune Paleo Diet also. There have been a few tiny studies...
  3. cyclinglady
    The IgA test, when used in celiac disease testing, is a control test. If you are producing IgA, the corresponding celiac disease tests: DGP IgA, TTG IgA, EMA IgA, will be considered valid. If you are IgA deficient, these tests are not accurate. About 10% of celiacs are IgA deficient. That said, the celiac antibodies tests are very good but not perfect...
  4. cyclinglady
    Thanks for sharing! ? Life-long Iron-deficieny anemia was my symptom that caused my GI (referred for a routine colonoscopy because I was over 50) to screen me for celiac disease. While my esophagus is fine, a repeat endoscopy five years after my celiac disease diagnosis revealed a healed small intestine and autoimmune gastritis (new) which usually...
  5. cyclinglady
    If a person’s celiac disease is active, they should focus on a strict gluten free diet first. No sense taking additional vitamins and minerals, if you are not going to address the root cause which would be active celiac disease.
  6. cyclinglady
    I lost my GB too before my celiac disease diagnosis. But my Celiac disease is in remission thanks to a clean gluten free diet. I made my house gluten free. My kid got her gluten fix at school, friends, house, etc. she has been test d for celiac disease twice. She thrived on a semi-gluten free diet. It was not costly, we just ate more naturally gluten...
  7. cyclinglady
    Hi! You do have a positive on the DGP IgG which means you have been correctly referred to a Gastroenterologist. You might be IgA (Immunoglobulin A) deficient which could impact the DGP IgA and TTG IgA. I guess your endo was trying to save you money by not checking to see if you are IgA deficient or he figured if you were IgA deficient, the IgG tests...
  8. cyclinglady
    Hum, most allergy testing, including RAST, is “iffy”: “About 50-60 percent of all blood tests and skin prick tests will yield a “false positive” result. This means that the test shows positive even though you are not really allergic to the food being tested.” https://www.foodallergy.org/life-with-food-allergies/food-allergy-101/diagnosis-testing/blo...
  9. cyclinglady
    It can be hard to accept. My hubby went gluten free 12 years before my diagnosis. His GP and my allergist advised him to give up gluten. Poor advice in terms of a formal diagnosis, but excellent advice at improving his health. It took him a good year to master the diet and not to cheat. Now, almost 20 years later, he NEVER cheats (not after the first...
  10. cyclinglady
    It is because the stool test is not yet accepted by the medical community. There is not enough scientific evidence that would cause Gastroenterologists who specialize in celiac disease to start using the stool tests to prove or help to prove a diagnosis. Even the blood tests (which are well proven to work) are not perfect. That is why Gastroenterologists...
  11. cyclinglady
    Hi! Unfortunately, all celiac disease testing (antibodies/blood test and endoscopy/biopsies) requires you to be on a full gluten diet. The exception is genetic testing. However, over 30% of the population carries the genes that could develop (only a tiny percentage do) into celiac disease. There is a problem with genetics. Not all genes have been...
  12. cyclinglady
    Unfortunately, cosmetics do not have to comply with FDA gluten free labeling. I hope you feel better soon.
  13. cyclinglady
    Going gluten free should not make anyone sick. No one needs gluten in order to survive. Many cultures never consume gluten. That is just common sense. If you do have celiac disease, you can be asymptomatic. I just had anemia no GI issues. Went for a colonoscopy (yeah, hit 50). My GI looked at my chart, saw the anemia and ordered the celiac disease...
  14. cyclinglady
    Wow, you have been through a lot! I am glad you finally have a diagnosis. GFinDC gave you some excellent advice. I think you need time to heal.
  15. cyclinglady
    Maybe time for a repeat endoscopy. It is common to develop other autoimmune disorders like IBD (Crohn’s, Ulcerative Colitis) or illnesses like SIBO. Rarely, cancer occurs, but it has happened to our members. What pills were prescribed? The only known treatment for celiac disease is a gluten free diet. What did the Mayo Clinic say? Did they diagnose y...
  16. cyclinglady
    So many of us are in the same boat. Once diagnosed, we realize that symptoms occurred decades before. Those symptoms can change too. Celiac disease is like a chameleon. If you continue the treatment by following a gluten free diet, you should heal. Healing is different for many because systemic issues are different. Most heal within two years. ...
  17. cyclinglady
    You said that feel much better on the gluten free diet. Consider just remaining gluten free. That stool test you took might have been correct for all we know (and I know nothing about that test). The real test is being able to heal or resolve symptoms on the gluten free diet. That is what counts. Good health. ? If you are still having lingering...
  18. cyclinglady
    While you did had a high result, I am not sure you had an actual celiac disease blood test. Did you have a blood test or was it a stool/fecal test? A stool/fecal is not recommended by any of the leading celiac disease research centers in the US. An older version of the AGA blood test was discontinued almost 10 years ago. It was replaced by the deamidated...
  19. cyclinglady
    What allergy tests were done? Were they done by an allergist? Unfortunately, allergy tests are not very accurate. That is why you should work with an allergist. Learn what a true allergy is and how IgG blood testing works (or does not): https://www.aaaai.org/conditions-and-treatments/library/allergy-library/IgG-food-test “IgG antibodies signify e...
  20. cyclinglady
    Where? You might get a better response.
  21. cyclinglady
    From what I have read, that particular test is not used in helping to diagnose celiac disease. It is for research use only. https://eaglebio.com/wp-content/uploads/data-pdf/gli35-k01.pdf-package-insert.pdf The GI Map test? I never had one. I found information on this website. It sounds great, but their one endorsement is by a naturopath. ...
  22. cyclinglady
    I would not worry about gluten either. I would make sure your place is well-ventilated. Breathing in any adhesives (if used) could make anyone feel ill.
  23. cyclinglady
    This is true! I was given Cipro (antibiotic) in the hospital before my celiac disease diagnosis (gallbladder surgery). For six months I had a buzzing in my left foot. Imagine a B-rated 1950’s horror film. A live Bee embedded in your foot! Like the worm that went through brains! “Scream......” I found a group 15 years ago who claimed neuropathies and s...
  24. cyclinglady
    You need to get another doctor. You need to get another doctor. I am serious. A GP can help by screening you, but you should be referred to a Gastroenterologist (GI) for a diagnosis. While is is common that some celiacs can be IgA deficient, not all are (like me). I think it is about 10%. The Immunoglobulin A (IgA) test is just used as a control...
  25. cyclinglady
    Oh no! They are gluten-free in the US. I pass them out every year. Hope you feel better soon.
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