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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
    First, about 35% of the population carries the genes that could (rare) develop into celiac disease. The genetic test just simply rules out celiac disease. I guess your hubby could develop it....some day or never. Baby? Get your daughter to your Ped. Babies can develop rashes (e.g. eczema) for so many things. It could be a wheat allergy and not...
  2. cyclinglady
    Every lab has different ranges. Post the ranges and we might be able to help.
  3. cyclinglady
    I am sorry you are suffering. My best guess (and I am not a doctor) is that you probably have celiac disease. The one thing I have learned is that symptoms can wax and wane. For example, when I was diagnosed, I only suffered from anemia and had no noticeable GI symptoms (which made my diagnosis so shocking). After a few gluten exposures, my symptoms changed...
  4. cyclinglady
    I was curious because I was recently diagnosed with autoimmune gastritis (stomach biopsy), but so far not Vitamin B-12 deficient, so I am assuming my intrinsic factor is still functioning enough to process B-12. My blood cells are very tiny as a result of Thalassemia which is a genetic anemia. So, I am not sure how that will work. Maybe, it will balance...
  5. cyclinglady
    How was her pernicious anemia diagnosed?
  6. cyclinglady
    Celiacs are often vitamin and mineral deficient when they are first diagnosed until they are healed (or maybe always if they have a poor diet). That can contribute to bruising. Ask you doctor to run a few tests for you: https://celiac.org/celiac-disease/understanding-celiac-disease-2/treating-celiac-disease/
  7. cyclinglady
    I had no GI symptoms when I was diagnosed with celiac disease. I just went in for a cancer screening colonoscopy (yep, I am over 50) and the GI saw that I was anemic (also have a genetic anemia) and ordered a celiac blood panel and included an endoscopy. You could ask for a celiac disease antibodies panel as there are a few other things that could...
  8. cyclinglady
    Well, do not leave with all your medical records! Some celiacs are seronegative. Did you know that? Besides, you stated that you had been gluten light. When you said full celiac panel, I assume this included all the TTG, EMA and DGP tests? I would go gluten free now and then find a new GI to review your charts. If your symptoms improve, you most likely...
  9. cyclinglady
    If you have stones in your gallbladder, they can prevent the bile from being released into your small intestine making it really hard to digest your food, especially fatty foods. If celiac disease and Crohn’s has been ruled out, be thankful. Perhaps, look towards getting that gallbladder removed. I wish I could have kept my gallbladder (0% non-functioning n...
  10. cyclinglady
    Yes, I tested negative to the TTG IgA. My only positive on the celiac panel was the DGP IgA. At the time of my diagnosis, I was very anemic. But the Immunoglobulin A (IgA) test should have been run with the TTG IgA. In celiac disease testing, it confirms if the celiac IgA tests actually work. Without it, who knows if the TTG IgA test results are valid...
  11. cyclinglady
    Did you get a report from the GI based on his visual or did you get the pathologist’s report? There are many types of gastritis. For example, acute gastritis might be due to food poisoning or a virus (think cruise ships). Chronic gastritis could be attributed to the H. Pylori bacteria or be autoimmune. You need to find out what type of gastritis y...
  12. cyclinglady
    I saw this! My hubby had the virus long ago, but I never had it (nor do I have the antibodies for it and he does based on lab tests). Maybe another virus got me years ago!
  13. cyclinglady
    Your hives might not be related to gluten. Last year, I suffered with daily hives (appeared every afternoon) that started with a tummy ache, which would progress to an itchy head and then thousands of hives from arms, torso, legs and even the bottom of my feet. They resolved by morning until the next afternoon. My allergist and GI suspected chronic autoimmune...
  14. cyclinglady
    I have to disagree. Corn gluten does not cause a celiac autoimmune reaction. You can have an allergy or an intolerance to corn. The website you referenced is not legitimate in my mind. It is a site that is selling products like books, supplements, certifications, and is referring people who suspect a gluten issue to people like chiropractors instead...
  15. cyclinglady
    Back in the day, I used to buy this brand when there was not very many options for my hubby. I think there are better brands out there today.
  16. cyclinglady
    When I had my first endoscopy, my GI told me that visually everything looked good, but my biopsies revealed extensive villi damage. I just had a repeat endoscopy. This time the equipment was newer and visually my GI could see healthy villi on the scope (he gave me a photo). No need to wait for biopsies. We knew I had healed. Maybe your GI has an older...
  17. cyclinglady
    Since you have so many hypersensitivity issues (google it), I would be concerned about your kids. Get them tested for celiac disease if you see any signs. They can develop it at any time. My kid was tested 4 years ago (negative, complete panel). Her doctor has standing lab orders for her to be retested this summer (she is gluten light now). Autoimmune...
  18. cyclinglady
    I am not knowledgeable about celiac genes as I never had them run. What I do know is that some 35% of the population carries the genes that could develop into celiac disease but only a very few actually do. Genetic testing is used to rule out celiac disease and not to diagnose it. Since you are gluten free, the only way to get a definitive diagnosis would...
  19. cyclinglady
    I think you need to find out how many biopsies were taken and the location of them. Get the actual copy of the pathologist’s report and the doctor’s notes on the procedure and other lab results. Consider asking for the rest of celiac panel which includes the EMA and DGP. Some slight elevations on the TTG can be due to other things like IBD or other aut...
  20. cyclinglady
    Does it matter? You felt better on a gluten free diet. Consider pursuing a gluten challenge (8 to 12 weeks) under a GI’s care because it sounds like you are doubting the whole gluten free thing. I can share that my hubby has no formal diagnosis but knows that gluten makes him sick. He has been gluten free for 17 years (12 years longer than me]. What n...
  21. cyclinglady
    Well, you got the PED GI referral. That is terrific news! Please ask that the complete panel be ordered. Kids and weird older adults like me, can often fail the TTG tests for reasons not clearly understood by celiac experts. Keep eating gluten daily or all celiac tests (even an endoscopy) will be invalid.
  22. cyclinglady
    Looks like you need to wait for the biopsy results. Are you sure your antibodies blood tests were all negative? Did you have the TTG, EMA and DGP (IgA and IgG versions)? Not all celiacs test positive on the more commonly used and cost effective TTG (like me).
  23. cyclinglady
    If you were only off two weeks, you should be able to trust the celiac antibodies test. Keep eating gluten until you have completed all testing and that usually includes the endoscopy. It sounds like you might have to wait for that procedure to be ordered. Any medical doctor should be able to order an antibodies blood test, but it takes a Gastroenterologist...
  24. cyclinglady
    Bartfull is no longer with us. She had celiac disease and has since passed away (cancer). She was a wealth of knowledge and offered common sense advice. As the Queen of passing out in my family (and having doctors see me have a Vasovagal response, including seizure-type reactions), I think healing from celiac disease or other autoimmune issues helps...
  25. cyclinglady
    @joy steward— Ravenwoodglass gave you some excellent advice. The Vagus nerve can be impacted by many things. So is there a connection between celiac disease and Vagus Nerve issues? Who knows for sure? Autoimmune can impact people in so many ways. if you are still consuming gluten, consider getting to a Gastroenterologist who can actually take a l...
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