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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
    Just as some foods can be toxic to you, so called “friends” can also be toxic. Maintaining emotional health is just as important. I have a few true friends that I can count on in times of trouble. True friends. The kind of friendships you can maintain for decades. Life is too short to have unsupportive people in your life. Celiac disease can really wee...
  2. cyclinglady
    What Karen said is true. Dermatitis Herpetiformis (DH) is celiac disease. The only known treatment for celiac disease or DH is a gluten free diet. Our DH forum members have stated that a very strict diet is required. They often do not eat out and avoid processed foods, even gluten free foods. This seems to be a good strategy until the rash is under control...
  3. cyclinglady
    I’d you can, consider a Gastroenterologist (GI) consult. You could have celiac disease or something else like Crohn’s. A GI is your best bet. How low was your Immunoglobulin A result? It really has to be close to zero for the test not to work, but then again, there are always anomalies (like me) who do not test positive to the TTG and I am not...
  4. cyclinglady
    Good question. Looking for itching/pain relief? I do not think it will stop the antibodies from building up in your skin when exposed to gluten though. ?
  5. cyclinglady
    Does your primary offer it every year? If so, consider taking it again. I am not a doctor, but I would think it would be prudent. Again, with a clean colonoscopy, I think you do not need one for another 10 years and that FIT test was probably tripped by other issues (like all that vomiting you described and being on a blood thinner).
  6. cyclinglady
    The GMA show on ABC News did an undercover test of pizza restaurants in New York that offered gluten free pizzas and when questioned, said they were safe for celiacs. They were assisted by the Gluten Free WatchDog who sent the pizzas out for testing. Not all were! Be careful! https://abcnews.go.com/GMA/Wellness/gluten-free-pizza-safe-cross-contamination...
  7. cyclinglady
    Hi! Labs have different ranges. Did the lab ranges show that the celiac results were negative? Also, it is odd that the standard TTG test was not taken (or do you not post?). The TTG is usually the “Go to” screening test. The DGP tests usually are not given during a screening (first round). https://celiac.org/about-celiac-disease/screening-and...
  8. cyclinglady
    What fantastic news! I think your GI is probably correct in that all that vomiting could have caused the blood in your test, especially since you just had a colonoscopy in January. Will he have you repeat the test in a few months? Like you, I think my health has improved, the stricter I have become with my gluten free diet. For me, it includes...
  9. cyclinglady
    It can be overwhelming, especially when you are feeling awful. The food journal can help. Being strictly gluten free can help. Within a year of my gluten-free diet or so, my enlarged thyroid and nodules actually disappeared. My thyroid antibodies did drop too. So, managing celiac disease can be critical to your overall health. It can make it easier...
  10. cyclinglady
    Here is my two cents. I have celiac disease and Hashimoto’s. By chance, during a repeat endoscopy, I was also diagnosed with autoimmune gastritis. I take some thyroid hormone replacement, but that helps with thyroid function and does not bring down my thyroid antibodies. There is nothing to do with the Gastritis until I become iron or B-12 deficient. ...
  11. cyclinglady
    Most meats are gluten free (fresh beef, pork, lamb, poultry) as well as fish. You have to worry about more processed meats like cooked seasoned chickens, deli meats, sausages, packaged and seasoned meats (e.g. corned beef brisket). The USDA does try to follow the FDA requirements for labeling gluten free. For example, I purchase a sausage brand that...
  12. cyclinglady
    Hard to interpret this. Looks like they ran the TTG test, but not sure if it was the TTG IgA or the TTG IgG and it appears that it was lumped in with the DGP IgG. The result was 30 which is borderline and should be reviewed by a GI. Did they run an Immunoglobulin A (IgA) test? This one checks to see if you can make IgA antibodies. It is used as a control...
  13. cyclinglady
    That is weird that you have a lab result for non-celiac gluten intolerance/sensitivity. Maybe if you get a negative on the celiac blood test, they suggest NCGI. Make sure you had the full panel. If my doctor had just ran the TTG (most commonly used celiac test), my diagnosis would have been missed. I test positive to only the DGP IgA. This repeats that...
  14. cyclinglady
    I am so sorry that your son is still ill. It sounds like he has healed from celiac disease (repeat blood and biopsies). Unfortunately, once you develop one autoimmune disorder, you can develop another. Has something like Chronic Fatigue Syndrome been ruled out? We tend to forget as celiacs that not all things are related to celiac disease. For...
  15. cyclinglady
    Are you sure you were actually tested for celiac disease by medical doctor? There is NO test for Non-celiac Gluten Intolerance at this time. Celiac disease (blood and intestinal biopsies) is usually ruled out first before doctors will give this diagnosis. Please get to a Gastroenterologist. He or she can rule out many conditions which many or may...
  16. cyclinglady
    Maybe you should consider getting tested for a wheat allergy (IgE response). Your symptoms sound more like an allergy and not gluten intolerance. I am not a doctor, but I get your symptoms when I am around cats or horses. I do not think you need to be on wheat to get tested (skin) I like getting tested for celiac disease. At least then you might be able...
  17. cyclinglady
    Age 51 Positive DGP IgA (all other panel tests were negative even on follow-up testing, including the TTG); Marsh Stage IIIB biopsies. Follow-up biopsies five years later revealed healed small intestine. No genetic testing. Symptom: Anemia, Iron-Deficiency
  18. cyclinglady
    Plastic is fine. So is foam. From what I have seen, any disposable goods (e.g. plates) derived from wheat are usually indicated on the packages.
  19. cyclinglady
    I agree with Ranchers wife. If I were a betting person, I would bet that gluten is getting into your diet. Why? Many celiacs fail to heal (more than 20 to 35%). Are they refractory? A tiny few. Most are getting gluten exposures causing non-responsive celiac disease. Others have concurrent issues like SIBO or IBD. https://www.beyondceliac.org...
  20. cyclinglady
    Please read up on Levofloxacin. It has a FDA black box warning. I developed neuropathies years ago (imagine a bee buzzing inside your foot causing electric jolts) after taking it (given to me in the hospital). The worse side effect is spontaneous snapping tendons. Just make sure this type of antibiotic (quinones family) is worth the risk. I think...
  21. cyclinglady
    Consider contacting the University of Chicago. They are a leading research center for celiac disease. It would definitely be worth a consult if your current GI does not go forward with the scope. https://www.cureceliacdisease.org/ It is NOT true that you need more than one positive in order to go through with the scope. Granted your son’s r...
  22. cyclinglady
    Just know that the SIBO can resolve, but celiac disease will not without being a gluten free diet. Getting a diagnosis can be critical for keeping him safe while at school. Know too that celiac disease is like a chameleon. Symptoms CAN change, He may have diarrhea now, but later he might not. Maybe just a touch of anemia or a broken bone. Maybe depression...
  23. cyclinglady
    I am NOT a doctor, but I disagree! Your son many very well have SIBO, but treating SIBO without treating celiac disease is pretty useless in my non-medical opinion. Is he concerned for your son’s current health? Should your son be in the hospital? SIBO can be confirmed through biopsies too and better than a breath test. Did he even have a SIBO breath t...
  24. cyclinglady
    Me. I test positive to only the DGP IgA even in many follow up tests. I have never had a positive on the TTG or EMA either. My DGP IgG is always negative too. Yet, my biopsies revealed a Marsh Stage IIIB which is moderate to severe small intestinal damage. My main symptom was anemia. Why just the DGP IgA? No one can say for sure, but it seems...
  25. cyclinglady
    Sorry, I did not see this post. I get stomach discomfort as my stomach empties into my small intestine after a gluten exposure (which triggers a temporary lactose intolerance) or it can occur when my autoimmune gastritis acts up. You might still have same damage despite your antibodies coming down. The celiac antibodies tests are not really...
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