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cyclinglady

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Everything posted by cyclinglady

  1. cyclinglady
    My visual on my endoscopy was normal. You have to wait for the pathologist’s report. Besides the TTG, did you run other tests? The TTG can be slightly elevated for other illnesses like Crohn’s. A lactose intolerant can be a result of celiac disease or you could be genetically predisposed. A huge chunk of the world’s population is genetically lacto...
  2. cyclinglady
    Unfortunately, it is about catching as many celiacs for the least amount of money. Some people with DH will be seronegative (negative on all the blood tests). Based on your low iron stores and the fact that you already have an AI disorder, and if your GI visually saw flattened villi (and you have what looks like DH), you probably do not need to see...
  3. cyclinglady
    No! Not according to those who have celiac disease and leading celiac experts!
  4. cyclinglady
    When were you diagnosed? It can take a year or more to feel better. Consider our Newbie 101 tips located at the top of the “Coping” section.
  5. cyclinglady
    This pharmacist advocates for celiacs. You can give this to your doctor to help him write prescriptions. Here is a current list: Open Original Shared Link But really, you need to have the pharmacist check for you or you call right there in the store. If the pharmacist will not do do it, pick another store. Usually, small independents go the...
  6. cyclinglady
    I think you should consider getting some second opinions. Perhaps push for a GI consult. A 14 year old should not have acid reflux which could be due to so many things. If you suspect celiac disease (make sure he was given the entire panel and not just the screening TTG with an IgA deficiency test) and wish to move forward, consider a gluten challenge...
  7. cyclinglady
    Celiac disease is an autoimmune disorder that attacks the small intestine making it difficult to absorb nutrients. As a result system issues often occur like osteoporosis, anemia, or neurological issues. Stomach inflammation with celiac disease is common, but ulcers? What was the root cause of your ulcer? H. Pylori? Was Crohn’s Disease ruled o...
  8. cyclinglady
    It looks and sounds like Rosacea but honestly, it could be anything and I am just a crazy lady on the internet. There are different types of Rosacea. It can flare with different foods. They think now it is linked to GI issues or autoimmune. So, in theory, gluten could set it off or it could be another food. Open Original Shared Link I have...
  9. cyclinglady
    The celiac antibodies tests are good, but they are not perfect. It is one reason why celiac experts still rely on the endoscopy to obtain biopsies for a firm diagnosis. But they were never designed for follow-up testing. In order to avoid frequent repeat biopsies (less face it, it is invasive and expensive), doctors rely on the only non-evasive tools in...
  10. cyclinglady
    I am past this issue (have a teen), but I highly recommend swim shirts and hats! Okay, we were the only dorks on Mediterranean beaches covered up, but no burns! I guess the shirts are more common here in California. A shirt, some zinc oxide on your nose (they make colors now which is great for water polo teams) and you look like a surfer, even if you are...
  11. cyclinglady
    Did you get the full celiac panel or just the screening TTG? Open Original Shared Link I test positive to only the DGP IgA. If my doctor had not ordered the entire panel, my diagnosis would have been missed! I had a routine colonoscopy scheduled because I am over 50 (all my friends were getting them ?!). My GI notice I had been iron deficient...
  12. cyclinglady
    Even an 8th grader found gluten in Cheerios! This kid is going places! Open Original Shared Link It is legit and not fake news! Open Original Shared Link
  13. cyclinglady
    Nothing pharamaceutical as of January of this year. I was at a celiac lecture with Dr. Sheila Crowe. She is currently the GI Association President and works out of UC San Diego. The gluten free diet is the only treatment and probably will be for a while. Gluten Ataxia is still a relatively new disease and is very rare. A very strict gluten-free...
  14. cyclinglady
    I assume you are talking about gluten ataxia? I have celiac disease (in remission as confirmed by repeat intestinal biopsy), but I do not have gluten ataxia. I did have and still have some slight cognitive issues and anxiety at times with some neuropathy, but that is due to my other autoimmune issues that ebb and flow and are beyond my control. I...
  15. cyclinglady
    Anemia is easy to catch. It can be determined from a CBC blood panel which is usually run at your annual physical. I had a few different types of anemia and one is genetic. So, I would say that I suffered about six months with breathing issues. I was always iron-deficient, but survived until menopause. 30 day periods can literally kill you. No chance...
  16. cyclinglady
    It is good that your Neurologist is covering all bases. Celiac disease can attack the brain and nervous system. It is called gluten ataxia. It is still a new disease, so there is not much information: Open Original Shared Link Open Original Shared Link I do know that some celiacs are seronegative. Some also present with dermatitis herpetaformis...
  17. cyclinglady
    What made your doctor order the celiac panel? Do you aphave any risk factors (see link)? What are your symptoms? Open Original Shared Link
  18. cyclinglady
    Did they not run the Tissue Transglutaminase Antibodies (TTG) tests? The TTG is the most commonly used test for celiac screening. The IgA (Immunoglobulin A) is used as a control test in the case of celiac disease testing. In your case, the DGP IgA test worked (but you said it was negative).
  19. cyclinglady
    Just worry about one thing at a time. My hubby has been gluten free for 17 years and he does not have a formal diagnosis. He went gluten free per the poor advice of two medical doctors. But the diet worked! There is no way he would do a gluten challenge. I can not blame him. The goal is to feel better. While it is a shame that your case is not...
  20. cyclinglady
    You are correct that Hashimoto’s is linked to celiac disease (both are autoimmune). The shortness of breath could be due to anemia as a result of having celiac disease. Your doctor can test you for both celiac disease and anemia. Shortness of breath is not usually due to Hashimoto’s (which I have), but is for anemia. Do NOT go gluten free or ALL cel...
  21. cyclinglady
    Trial the diet for six months. It takes that long and for some even longer, to see real improvement based on member comments. Expect set backs like you have experienced. It is common. Read the Newbie 101 section located at the top of the “Coping” section or research on your own. If you do not feel that you are improving (and get that TTG test retaken), l...
  22. cyclinglady
    Whoa! Take a deep breath! You are going to be okay! I think you have realized that being mostly gluten free is not cutting it! I have celiac disease and I have had vertebrae fractures doing nothing! My repeat bone scan shows that I am not getting worse which is about all that I can expect for a post menopausal woman. I do eat well, I exercise...
  23. cyclinglady
    My daughter just attended her prom with a group of her friends (it is more common than dates) out here on the West Coast. One of her friends was just diagnosed with celiac disease a few months ago. They picked a restaurant that had good reviews on “Find Me Gluten Free” so that she would not get sick. It was not a glamorous place and they were over dre...
  24. cyclinglady
    You are right that celiac disease does not cause anaphylaxis, but both are a part of hypersensitivity which is an over reaction of the immune system. Here is some information. It is from Wikipedia, but it is less technical than others which are directed to medical students. https://en.m.wikipedia.org/wiki/Hypersensitivity I can not say why some...
  25. cyclinglady
    Welcome! Were you diagnosed via biopsies obtained from an endoscopy procedure? I ask because you might have other concurrent issues like SIBO, h. pylori, Crohn’s, etc.). This would have been noted by the pathologist and Gastroenterologist. That aside, when you have small intestinal damage, it can hurt to digest almost anything. On top of that m...
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