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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
    I was able to take iron supplements. Within three months, my lab tests improved (2 to 24). Hemoglobin normalized. It was below a 7 and I was out of breath all the time. Took lots of breaks. I ceased the supplements after the initial three months. With my Thalassemia, celiac disease and going through menopause, my hemoglobin dropped drastically (I refused...
  2. cyclinglady
    My iron-deficient anemia resolved within a few short months of going gluten free (per lab tests). In my favor though, I had been living with a gluten free person for 12 years, so I avoided the classic mistakes of a Newbie. If your anemia is not resolving, look to your diet or another illness. I push this because I suffered from anemia my entire life. ...
  3. cyclinglady
    If you and your doctors suspect refractory celiac disease (2 types), your GI should order an endoscopy to see if you have active celiac disease. Refractory celiac disease is RARE. Some GI’s are quick to jump to that conclusion, but research has shown that many symptomatic celiacs are non-responsive simply because they are getting hidden amounts of gluten i...
  4. cyclinglady
    Ennis is correct, you could have developed a new autoimmune issue like Ulcerative Colitis or you may not have knocked out the ER, diagnosed Colitis. Microscopic Colitis can be difficult to eradicate if that was your diagnosis. The chemo drug might be because they suspect refractory celiac disease or something like IBD. It sounds like two GI docs...
  5. cyclinglady
    Unless gluten is airborne (flour, particle-size), you should be able to work successfully at a desk that has had gluten-consuming people at it. A quick wipe down (damp cloth or disposable wipe) of obvious crumbs should do the trick. What may be the issue is that you are putting your unclean hands in your mouth. That could definitely gluten you. You can...
  6. cyclinglady
    Hi Mike! This is a pretty old posting, so I will respond. Coke products are gluten free. Are they healthy? In my opinion no! However, I have been known to have a soft drink when I am out in a social situation. The 20 parts per million (ppm) cut off was established a few years ago. But let’s face it, not much research was done. It is safe f...
  7. cyclinglady
    I think you need to wait for the biopsy results. I know that waiting is so hard! Intestinal damage can be caused by so many things other than celiac disease: https://www.cureceliacdisease.org/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease/ Response to the gluten free diet for a celiac or maybe a person with NCGS...
  8. cyclinglady
    Only you can decide if the challenge is worth it. I have a firm diagnosis but my hubby does not. He went gluten free per the poor advice (not getting tested for celiac disease first) of two medical doctors. It worked. He has been gluten free for almost 20 years. He will say that I get way more support from family, friends and medical, but that does not...
  9. cyclinglady
    It might be an intolerance. Your Dad is like your canary. If he is fine (even though the severity of his symptoms are less that yours), you can probably rule out gluten as the culprit.
  10. cyclinglady
    You might get a better response in Celiac.com’s forum section. I drink Republic of Tea (variety of flavors). It is certified gluten free. I do drink black tea and use Lipton. It is not certified, but many members drink it and have not reported getting exposed to gluten. It might not be a gluten response (so hard to say), but an intolerance to the additives. ...
  11. cyclinglady
    I am sorry, I obviously did not communicate well. Last year, I was glutened. My antibodies were off the charts and that included thyroid antibodies as well. Not only did I have GI issues, but I developed hives for six months. I went almost a year from my initial exposure (source unknown) and was still having GI issues. Finally, after a few months...
  12. cyclinglady
    Sometimes we blame everything in celiac disease. If vertigo is a new symptom, perhaps you have developed another issue. Personally, I do not use Lindt chocolate. Cross contamination on shared manufacturing lines seems to be a possibility. I hope you figure it out. Vertigo must be awful!
  13. cyclinglady
    Welcome! You have to go by the original lab’s reference range at the time the test was done. Reference ranges vary from lab to lab. There is no way you can assume that you had a positive. You can either stay gluten free or do the gluten challenge which takes 8 to 12 weeks for the blood panel: https://www.cureceliacdisease.org/faq/what-is-a...
  14. cyclinglady
    Welcome! Sorry for the delay, I was hoping someone from Canada would be able to respond. It sounds like you are doing the right thing by going gluten free now and then reintroducing gluten a few weeks prior to your endoscopy. It is not the best situation, but we all have various insurance, provider or financial restrictions. The other possibility...
  15. cyclinglady
    Hang in there! A challenge can be very tough. My heart goes out to you. My only advice is to rest as much as possible. If you just had the screening TTG test years ago, your diagnosis might have been missed. For example. I only test positive to the DGP IgA test and never the TTG or EMA. And do you know that 10% of celiacs are seronegative? Whatever...
  16. cyclinglady
    I have no clue, but I would bet that you caught a cold. I hope you recover fast!
  17. cyclinglady
    I agree with Ravenwoodglass. I also understand your frustration. ? The actual proof is how you may feel on the diet. Give it a solid six months.
  18. cyclinglady
    That diagnosis can be so frustrating. Unfortunately, intestinal damage can be patchy and therefore, easy to miss. Please, please take your doctor’s advice about going gluten free, and in six months consider asking to get your antibodies retested. That and gauge how you feel!
  19. cyclinglady
    Welcome! While there are some benefits to having a celiac disease diagnosis, I am not sure getting sick again is worth it. I am formally diagnosed. It has made it easier for family, friends and medical to take me seriously. It has made it easier for me to commit to a life long diet. It has also made it easier for my doctors to identify new concurrent...
  20. cyclinglady
    So, I am assuming Immunoglobulin A test was not given. Your doctor can not say that the TTG test result (that was less than 1) is even accurate. If you do not make IgA, then the IgA tests are invalid. Again, your result is not standard, but that does not mean you can not have celiac disease. I have never had a positive on either of the two tests that...
  21. cyclinglady
    Hi! It is up to you whether or not you want to push for additional celiac disease testing with the NHS. I am not a doctor, but taking supplements will 8mprove you blood work. The problem is that if you have celiac disease (or another underlying issue), you will become deficient again once you stop the supplements. Keep in mind that you did...
  22. cyclinglady
    Waiting is is hard! Hang in there. ?
  23. cyclinglady
    I just wanted to add that when I was diagnosed, I only suffered with anemia that was always blamed on my being a female. Seriously. It is amazing that I was able do triathalons and century rides.....I think it was due to true grit and the bodies ability to cope. If my doctor had not ordered the complete celiac panel, my diagnosis would have been missed...
  24. cyclinglady
    Welcome! I do not have much time, but you can start with our “Newbie 101” thread located under the “Coping” section of the forum. It contains some great tips.
  25. cyclinglady
    Did you get the complete celiac panel last year? If my GI had not ordered it, my diagnosis would have been missed. Consider retesting if you go back on a gluten diet for 6 to 12 weeks. Consider working with a dietitian who is knowledgeable about the gluten free diet. How do you know you react to all those foods? Are you keeping a food journal or...
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