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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
    Thanks, Frieze! Point well taken. i guess I kept thinking of how awful her blood draws are for her. She will have to tough it out.
  2. cyclinglady
    I am not sure if my insurance covers it, but I am considering it. My kid has tested negative for celiac disease. She will be tested every few years for life (even if symptom free), so genetic testing could allow her to opt out of the celiac blood panel. But with my diagnosis and her Dad having gluten issues (15 years gluten free), plus strong autoimmune...
  3. cyclinglady
    Welcome! ? . There are many folks here who do not have an official diagnosis of celiac disease for a variety of reasons. Are you going to eliminate gluten (wheat, barley, rye) or just wheat? With such a strong family history, I would suggest going gluten free. By the way, I tested negative to the TTG IGA and the Iga deficieny tests too (and still...
  4. cyclinglady
    I hope it goes well! As far as going gluten free without a diagnosis? Not me, but my hubby. He has been gluten-free for 15 years. He refuses to do a challenge. He knows gluten makes him sick. Wish his doctors had been celiac-savvy back then. He went gluten-free per the advice of two medical doctors. To be honest, we need him to be well. We...
  5. cyclinglady
    Karen gave excellent advice. I am just here to back her up. It is a shame that your GI did not test her for celiac disease when he did the biopsy. Perhaps he did not even suspect celiac disease (let's hope it is that and not that he is incompetent). The gold standard for a celiac diagnosis includes a positive biopsy. But maybe he did not obtain...
  6. cyclinglady
    Yes, it is possible to have many different intolerances. Here is one theory proposed by Dr. Fasano, a leading celiac disease researcher: Open Original Shared Link Open Original Shared Link Some intolerances resolve on a gluten free diet and some do not. Others can develop. I suspect accidental exposure "getting glutened" can contribute to...
  7. cyclinglady
    Celiac disease is not like an allergic reaction which can start swiftly and end quickly. It is a autoimmune response to gluten exposure. Consuming gluten for a celiac sets off a "flare -up" (for lack of a better description) that can go on and on for days, weeks or months. For example, I was Glutened last July. Symptoms continued to worsen. Six weeks...
  8. cyclinglady
    Sound advice from Gemini. Just wanted you to know that I had only one "weakly" positive on the DGP IGA, yet biopsies revealed a Marsh Stage IIIB (moderate to severe intestinal damage). Anemia was really my only symptom at the time. A positive is a positive! I wish you well!
  9. cyclinglady
    I did not have any symptoms (tummy wise) when I was diagnosed. My symptoms have evolved though. Now, I start belching within an hour or so (as soon as the stomach starts emptying). But....everyone presents differently. Three months is still in the newbie stage. He could have a virus .....who knows? Do not beat yourself up. Just move forward! Keep...
  10. cyclinglady
    FlowerQueen provided excellent advice! About cross contamination.....I was Glutened last July. I have no idea what got me. I am very careful since my hubby has been gluten-free for 15 years and I was diagnosed three years ago. It was something that hubby did not ingest. Anyway, six weeks later, my antibodies (as measured by my GI) were higher than when...
  11. cyclinglady
    The Univerity of Chicago is recommending about 1 to 2 slices of bread daily for two to four weeks prior to an endoscopy. (See Karen's link.) You can substitute with other more yummier gluten-containing products like pasta and cake! You are cutting it close. You will not get an accurate celiac blood test because that requires 8 to 12 weeks. Can...
  12. cyclinglady
    The Toberlone site states that they do not use any gluten ingrediants: http://www.toblerone.co.uk/faqs Maybe he reacted to another ingredient? Sometime we Celiacs tend to jump to being Glutened first. May be he had food poisoning or a virus? Just a thought.
  13. cyclinglady
    My folks have Kaiser. Here is my suggestion....get back on gluten and ask for a GI referral since you had a slight positive and were gluten-free for two weeks prior to the blood draw. The GI can order then order the entire celiac disease panel (kaiser prohibits the full panel ordered by PCP docs probably to control costs.) Why? I test normal on...
  14. cyclinglady
    I agree! celiac disease can be ruled out, but that doesn't mean that you do not have a gluten issue. Science still does not know much about gluten sensitivities. They barely understand celiac disease! Someday there might be a test, but for now, use a food journal. My hubby went gluten-free 12 years before my diagnosis per the poor advice of his...
  15. cyclinglady
    Did you get or do you have all the lab results and files from you original GI? Were they presented to your new GI and PCP? The new GI might be tainted by folks claiming celiac disease but are on the gluten-free bandwagon! Your word against hers. I have all my medical records for the past 20 years. I summarize my conditions, but attach lab copies...
  16. cyclinglady
    Again, in the case of celiac disease testing the iga deficiency test is just used as a control test. It tells you if the other celiac disease iga tests are actually working. If you are low on the iga deficiency test when being tested for celiac disease, then the doctor needs to Run the entire panel and look only at the IGG test results. Your doctor did...
  17. cyclinglady
    Here is my two cents. I manage my care using my GP/PCP doctor (thyroid, celiac disease) but I do have a GI. Why? My insurance/provider only allows a GI to order a complete panel. Yep, it is true! I have not had any follow-up biopsies. I am doing well. I have had follow-up blood tests. Each medical procedure has risks. You probably...
  18. cyclinglady
    The IGA deficiency test is used in celiac disease testing as a control test. It validates all the iga celiac tests (like Ttg iga). The rest of your panel is negative (IGG) (assuming you were consuming gluten daily) and your gene test was negative making celiac disease unlikely, but I am not a doctor that's for sure. Now, having an IGa deficiency...
  19. cyclinglady
    Not all Celiacs tests positive to the TTg (like me) even on follow-up testing. You might consider asking for a complete celiac panel, especially with your family history and the fact that she is a kid. Often the DGP tests are better for small children (Google it). Make sure her diet is full of gluten. At least 1 to slices of bread. It sounds like she...
  20. cyclinglady
    Karen did provide a link to the University of Chicago's celiac website which is a leading celiac disease researcher. Frankly, we both reference them because their website is excellent compared to others. When did you actually get tested for celiac disease? I do know that you can develop celiac disease at anytime (my kid gets tested every two years...
  21. cyclinglady
    I am not a doctor, but it appears that you are negative on the entire celiac panel. Even though you have an iGA deficieny, the IGG tests should have caught celiac disease and they did not. It only takes one positive on the panel, for a GI to take notice and order an endoscopy. AI disorders run in families. You might not have celiac disease, but...
  22. cyclinglady
    Most likely yes.
  23. cyclinglady
    These are the celiac disease blood tests: Open Original Shared Link
  24. cyclinglady
    I am so sorry Carie that your doctors are.....lame (for lack of a better description). For a few dollars, a celiac blood panel may have helped to rule out celiac disease. Recommending that you go gluten free is ridiculous without complete testing! How many biopsies were even taken? It is recommended that 4 to 6 are taken. It is up to you to decide...
  25. cyclinglady
    An IgA deficiency can cause false negatives on the celiac IgA tests (DGP and TTG). Did you have the celiac IGG versions? If not, you can ask your GI for the complete panel. As far as Cyrex: Open Original Shared Link
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