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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
    The odds are low, but you could still have celiac disease. I am not a doctor, do not know your symptoms or other health issues you might have. At least try to get a celiac-savvy to review your history. https://www.ncbi.nlm.nih.gov/pubmed/28437323 More from some members: https://www.celiac.com/forums/topic/104880-thanks-for-sharing-your...
  2. cyclinglady
    No rough estimate. The celiac tests are good, but not perfect. It is why, even after some years of celiac experts debating, the biopsy is still the gold standard in diagnosing celiac disease. I am sorry that your case does not follow the norm.
  3. cyclinglady
    It only takes one positive on the panel to move forward. I was positive only on the DGP IgA and yet I had some pretty severe small intestinal damage per my biopsies. Even if I am exposed to gluten, only my DGP IgA is ever elevated. Get a GI referral who is celiac-savvy. Do not go gluten free until all testing is complete. If everything is normal, then...
  4. cyclinglady
    Most celiac experts advise being under a doctor’s care while attempting to do a gluten challenge. You can be become pretty sick and react differently (usually worse based on forum member input). Your test results for celiac disease were most likely negative because you had been gluten free for so long (regardless of a few exposures). All celiac t...
  5. cyclinglady
    I agree with Karen. Feed your daughter good, nutritionally dense, gluten free foods and she should start thriving. At four, she should have plenty of time to catch up. My own daughter who does not have celiac disease was always under 10% in weight. She comes from a family of little people. By the time she was 6 she was closer to the 50% range and held...
  6. cyclinglady
    Time for some follow-up testing. You may have something else besides celiac disease going on. I was struggling with stomach pain, reflux and indigestion. A recent repeat endoscopy revealed a healed small intestine, but autoimmune gastritis. Gluten free is NOT healing that! Get to the doctor!
  7. cyclinglady
    Celiac antibodies can be that high. We just had a poster on here today! My lab only goes to 200, so mine might have been as high as your daughters. What is known is that antibodies do not always correlate to severe intestinal damage. Get the endoscopy. Now, this is important......VERY important.....keep her on gluten until she has the endoscopy and...
  8. cyclinglady
    Good grief! I get the FDA recall announcements via email. Rarely, do I encounter gluten as the source of the recall. Today I googled “gluten recall” and got a bunch of hits. Many are issued from news reporting agencies in GB, Australia and NZ. I guess the US either has SO many recalls that the news reporting agencies do not bother to keep up, or the...
  9. cyclinglady
    Anemia is one of the more common symptoms of celiac disease as is osteoporosis. The good news is that with a gluten free diet, everything should resolve as you are young. In my case, I did not know I had osteoporosis (you might not have it), but I am old and it is really too late to build a lot of bone, but you can. Make an extra effort to exercise and...
  10. cyclinglady
    I do not think it is false. Some labs, like mine, cut off at 200 when anything over 20 is considered abnormal. I have had thyroid antibodies test results that were measure at over 2,000 when anything over 30 was considered to be a positive. It all depends on the lab. But higher antibodies does not necessarily correlate with intestinal damage. In other...
  11. cyclinglady
    Matt has given you excellent advice. I just want to toss in your fast blood glucose at 108. Maybe it is time to get back on that keto diet or cut down on carb? Your result is prediabetic. Do not let that go! A change in diet now and you might not ever progress to full-blown diabetes. Research and talk to your doctor about an HA1C test. https...
  12. cyclinglady
    Welcome! We are not doctors, but just people who have celiac disease. Do you suspect celiac disease? If so, these are the blood tests: http://www.cureceliacdisease.org/screening/ If your ANA was positive, what diagnosis did they give you? Was Rheumatoid Arthritis ruled out?
  13. cyclinglady
    Not sure if there is a direct correlation, but you can have many illnesses at the same time. How long have you been diagnosed with celiac disease?
  14. cyclinglady
    Great! In the meantime, keep eating gluten or you will get inaccurate test results and be in diagnostic limboland. You can cut out dairy or experiment with lactose free or low foods (e.g. butter, yogurt, hard cheese, etc). This might relieve symptoms a bit. Whatever you do, keep eating gluten until all celiac testing is complete (and that may include...
  15. cyclinglady
    Read this about the 23 and Me test: https://www.scientificamerican.com/article/23andme-is-terrifying-but-not-for-the-reasons-the-fda-thinks/ About 30 to 40% of the population carries the genes that could develop into celiac disease. I suppose you could get the genetic test, so that if negative, you will know that you will never get celiac disease...
  16. cyclinglady
    Yes, I agree with Karen (and so do all celiac experts). He still has celiac disease (lifelong), but he has healed. What did they say about his GERD? Gastritis? Was H. Pylori ruled out? I ask because my recently endoscopy (five years gluten free after my celiac disease diagnosis), revealed a healed small intestine, but that I have chronic Autoimmune...
  17. cyclinglady
    Use the search box located at the top right of the forum. You will find plenty of information about Communion Hosts. Welcome to the forum!
  18. cyclinglady
    Welcome! Consider calling the GI’s office every few days for a cancellation or ask any PCP/GP for a celiac antibodies test now (any medical doctor can order one). Learn more about the blood test: http://www.cureceliacdisease.org/screening/
  19. cyclinglady
    Look at me. Antibodies off the charts. Every single time I went in to my GI over the past five years. So discouraging, yet my small intestine has completely healed (repeat endoscopy 1/2018) . I talked to Melinda Dennis, RD who works out of Beth Israel in Boston recently. She said that at their Celiac Center they have found that the antibodies testing...
  20. cyclinglady
    I agree with Tessa. There is no “one size fits all” dietary approach that will aid in healing from celiac disease. The only common food to be avoided at all costs is gluten. Intolerances or allergies from other foods may impact individuals differently. Most of us here will advise that if your GI issues are severe when first diagnosed, to avo...
  21. cyclinglady
    Since he is little, just into the diet for three months, and has some catching up to do, consider NOT eating out for the next few months. He is not going to miss fast food at this age. Most likely, it was the pizza. Dining out is like playing Russian roulette. It takes time to get down all the things you need to explain to the chef or manager. Know...
  22. cyclinglady
    I sincerely hope you feel better soon. Let us know if you have any questions about the gluten free diet. My own hubby went Gluten Free long before my diagnosis. He did get well and refuses to go back on gluten in order to get a formal diagnosis. However, he will tell you that I have had way more support from family, friends and medical. So, it...
  23. cyclinglady
    I think you should wisely wait for your doctors to comment. Did the VA ever run the TTG test for you? What were the results? Remember, 30 to 35% of the population carry the genes that COULD develop into celiac disease. On a few actually develop it. It is used to exclude celiac disease and not to diagnose it. Pretty much most celiac experts say if...
  24. cyclinglady
    If you suspect celiac disease, call your doctor and ask about testing while you are still on a gluten diet. Be sure to tell him about that supplement you took in an “extremely high dose”. Did you even read about the serious side effects of it? Maybe you are reacting to it! https://www.webmd.com/diet/supplement-guide-yohimbe#1
  25. cyclinglady
    It sounds like both your endoscopy and your colonoscopy were normal. But what were they looking for or ruling out as a source of your anemia (celiac disease, cancer, inflammatory bowel disorder, etc)? What kind of anemia do you have? Even on a gluten free diet, your anemia never resolved? When did your doctor advise you to go gluten free originally...
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