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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
    Too bad your GP was not aware that all celiac testing requires you to be on a full gluten diet. Your GI seems to be misinformed as well. A gluten challenge requires a patient to go back on gluten for six to 12 weeks. It can take that long for antibodies to show up in the blood stream. Good luck on your continued journey towards good health. Keep...
  2. cyclinglady
    Nice to hear she is improving. Zonulin (as discovered by Dr. Fasano (PED GI/celiac expert at Massachusetts General/Harvard and team) is higher in Celiac patients. It plays a role in the gut acting as gatekeepers. Too many Zonulin and the gates malfunction leading to what is known as leaky gut. It can help explain the many intolerances a celiac can...
  3. cyclinglady
    I am sorry that you have been struggling with your son’s health issues. While you are concerned about a celiac diagnosis and the possibility of having to put him on a gluten free diet, you might have discovered the root cause of all your son’s issues. All the things you have described, have occurred with other children within the forum. Please take the...
  4. cyclinglady
    I buy it. I do not use the packet though. Too sweet for me. Save the bone and scraps for soup.
  5. cyclinglady
    I pretty much do not drink as I have autoimmune gastritis now. ?. However, distilled alcohol is gluten free, while brewed (beer) is not. As Rose stated, cross contamination could always occur especially if flavors are added. I used to stick with potato vodka. Sometimes piece of mind can be priceless. I also like REAL gluten free beers and not “gluten r...
  6. cyclinglady
    You can trial the gluten-free diet (it will not hurt you), or keep working to figure out a diagnosis. White blood cells in the gut can be attributed to many things besides celiac disease. https://www.cureceliacdisease.org/wp-content/uploads/CdC_Newsletter_2016_Issue01_FINAL.pdf
  7. cyclinglady
    Yep, Ennis gave you the standard length of time. If you can stand it, add an extra week for insurance. But that is not based on medical evidence, but my own personal opinion (though the range used to be 2 to 6 weeks). All celiacs are a bit different and I am a bit cautious or conservative. Watch this diet by a leading expert, Dr. Murray at the...
  8. cyclinglady
    You are a bit low on Immunoglobulin A (IgA), but this test is used as a control test to validate any IgA test used for celiac disease (e.g. TTG IgA). Your results indicate that you do not have celiac disease. But some celiacs are seronegative. Your case is not clear cut. I bet your doctor will advise you to trial the gluten free diet. If you feel...
  9. cyclinglady
    Welcome! Please do not freak out. It is a lot to take in. First, you probably do have celiac disease. You tested positive on four celiac blood tests. The small intestine is vast. Like bigger than a tennis court. If you had had the blood test done prior to your endoscopy, he had been looking for celiac disease by taking biopsies from several...
  10. cyclinglady
    I applaud you for doing a gluten challenge! It can be tough. I never experienced a challenge, but I have been glutened and it is awful. I would let your GP attempt the skin biopsy if he is willing. You can still pursue an intestinal biopsy. I think with your GP’s assistance this is certainly possible. The challenge for that is much less, only t...
  11. cyclinglady
    So true! I had a recent repeat endoscopy which revealed very healthy healed villi and my GI went in deep, my DGP IgA was persistently elevated even after a strict “Fasano” gluten-free diet. The blood tests are good, but not perfect.
  12. cyclinglady
    Fibroids? Me too! Happy to report that menopause solved them.
  13. cyclinglady
    @healthysquirrel @Elliottohonedhome This was just published on celiac.com today, but this little girl was very ill. The gluten-free Diet was not helping. Turns out living where wheat is being farmed (Kansas) was the culprit. She was breathing and swallowing wheat dust! She lived blocks from a silo. They now live in Colorado. https...
  14. cyclinglady
    Did you talk to the GI about seronegative celiacs? That you had been gluten free at the time of testing? I encouraged you previously to remain gluten free until you could do a gluten challenge at the winter break or summer since you were student. I guess your GI does not suspect celiac disease at all. He should know that celiac disease testing requires...
  15. cyclinglady
    Two positives, even weak, are probably accurate and are not false positives. But who knows? My GI told me I had a weak positive (just a positive on the DGP IgA). Biopsies revealed some pretty severe damage though. I get it. Denial. That was me. I just went in for a routine colonoscopy because I was over 50 and all my friends were getting them...
  16. cyclinglady
    Symptoms for many illnesses often overlap. So, it is impossible to guess what might be your issue. You can rule out celiac disease by getting tested. Ask your doctor. In the meantime, keep eating gluten or all the celiac disease tests will be invalid. http://www.cureceliacdisease.org/screening/ Your “acne” may be rosacea which is now com...
  17. cyclinglady
    Whatever you do, keep consuming gluten daily! This is critical for the endoscopy which is being done to obtain intestinal biopsies. Make sure your GI takes four or more biopsies in the small intestine (more if he sees some inflammation in the stomach). Okay, we are not doctors but we can share our personal experiences. Here is my story. Like...
  18. cyclinglady
    It seems like you are doing the right thing by getting intestinal biopsies. Make sure your GI takes the appropriate amount and from the right locations. Have that conversation with him or her in advance, even if it is an email. Start googling to learn more. Above all, KEEP EATING Gluten DAILY or you will mess up results.
  19. cyclinglady
    Sorry, but your doctor should have known that ALL celiac disease testing requires you to be on a daily diet of gluten. Learn more: http://www.cureceliacdisease.org/screening/ https://www.mayoclinic.org/diseases-conditions/celiac-disease/diagnosis-treatment/drc-20352225 You could consider a gluten challenge which would require you to...
  20. cyclinglady
    Have you been tested for celiac disease?
  21. cyclinglady
    Please research gluten ataxia which is a very real condition, but not well known. If you suspect ataxia, then a very strict gluten free diet can help. Really strict. Do not eat out and avoid even processed gluten-free foods until you see improvement. Nerve damage can be very slow to heal. https://www.medicalnewstoday.com/articles/320730.php https...
  22. cyclinglady
    No way you are hogging this post! We are bound to help someone else. I am sorry that I sounded so harsh. It was not my intent. I am glad that you are out of the hospital. I can imagine just how frustrated you are not knowing what exactly is going on with you. I have been there and done that! Do not give up! Keep researching. Eventually...
  23. cyclinglady
    Consider posting your question in the forum section. You might get a better response. ?
  24. cyclinglady
    While it is hard to remain gluten free, there are significant benefits for a celiac. I personally remain gluten free because I do not want to develop anymore autoimmune disorders or cancer. I went in for a routine colonoscopy (yep, I am over 50). During my GI consult, he suggested that I get tested for celiac disease based on my life-long bouts of...
  25. cyclinglady
    Nice to have new sheets! Hey, consider joining a group of any kind. We do not celebrate birthdays anymore (adults), so I am not the person who can emphasize with you on that issue, but socializing is important. Consider a volunteer group that helps others.
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