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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
    This might help (article from gluten-free And More? https://www.glutenfreeandmore.com/issues/dermatitis-herpetiformis-the-celiac-disease-rash/ While I do not have DH, I have experienced chills when exposed to gluten along with many other symptoms.
  2. cyclinglady
    Your photo? It could be DH, but lots of rashes look the same. Odds are it is celiac disease since your husband has been diagnosed with DH. Consider reading through the DH section of this forum for tips on managing DH. I hope your son feels better soon.
  3. cyclinglady
    Blogs, fake news, what is a celiac or Non-celiac Gluten Sensitive to do? Stick with well-established, published or non-profit (501 3(c) celiac groups. Be wary of sites that try to sell you a cure. The gluten-free Society certifies doctors as being gluten-free savvy. What quackery! Want to be certified too? I can print you off a color certificate. ...
  4. cyclinglady
    Yuban. The stuff my whole family uses. I just bought a grinder and tried Costco’s Kirkland brand whole bean roasted by Starbucks. I prefer Yuban still. Searching for a better coffee, but have yet to find it.
  5. cyclinglady
    Welcome! This posting is from 2007 and ingredients, manufacturing processes, and regulations change (e.g. FDA/gluten free). A cough drop is a processed product. If you are on a gluten free diet, each label must be carefully read and often the manufacturer must be contacted to confirm a gluten free status.
  6. cyclinglady
    Like Frieze stated, you have a positive TTG IgG and your Immunoglobulin A could be too low for the celiac IgA versions of the test to work. Unfortunately, your biopsy did not reveal damage, but that could easily be due to the location of the damage. The surface area of the small intestine is larger than the size of a tennis court! So easy to miss spotty...
  7. cyclinglady
    Keep us posted. Inquiring minds want to know! Seriously, you could help someone else in the future who has a similar situation. I hope you feel better soon.
  8. cyclinglady
    Nerve damage can take a long time to heal. A long time. Maybe never (otherwise all people with spinal injuries would recover). But most members report improvement over time. A month into a clean gluten-free diet is not enough time, in my non-medical opinion. That said, you may have other autoimmune issues that could cause the same nerve issues...
  9. cyclinglady
    Celiac testing is not perfect unfortunately. For example, some celiacs do not have measurable antibodies in their bloodstream, yet they have intestinal damage. Some celiacs can maintain high levels of antibodies in their blood stream even though their intestines have healed (based on repeat biopsies) and years of being gluten free. Again, the tests are...
  10. cyclinglady
    Most members report taking a year to really feel better. That is how long it took me based on symptoms. Celiac disease impacts many body symptoms. While my anemia resolved within a few short months (per lab tests), my fractures and bone pain (osteoporosis due to celiac disease), took much longer. Hang in there! Do not eat out until you are...
  11. cyclinglady
    Plain old coffee is safe for celiacs. I do not drink flavored coffees, so if that is your thing, go with the recommendation from Ennis. I really like Ravenwoodglass’ suggestion too. Keep things all natural (if possible) while healing. It makes it easier to work around intolerances that might not be identified. I drink my coffee with cream. How d...
  12. cyclinglady
    When I was diagnosed five years ago, my GI told me that everything looked good on my scope. My biopsies revealed a Marsh Stage IIIB. Turns out his scope was not able to visually see the villi. My new GI has the latest and greatest scope. We could actually see the healthy villi during a repeat endoscopy. My biopsies confirmed no signs of celiac disease...
  13. cyclinglady
    Try cooking meals in batches on your days off. Keep in the frig or freeze small portions. Planning meals makes it so much easier on a tight schedule. I know this seems like lame advice, but it is true. I found this You Tuber (no personal connection, just selected one with many views). Of course, modify for gluten free and your other food intolerances...
  14. cyclinglady
    Maureen, DH is celiac disease. It manifests on the skin. The antibodies that cause celiac disease/DH are actually in the skin and can take a very long time to resolve (on a gluten-free diet). I do not have DH, but if you read the postings in the DH section, you will find that DH suffers must be very strict in order to prevent flare-ups which often...
  15. cyclinglady
    Hi! I am sorry that your son is ill. An elevated (slightly) TTG IgA can be attributed to other illnesses. Have those been ruled out? http://www.cureceliacdisease.org/faq/how-does-one-rule-out-other-possible-causes-of-the-positive-ttg-blood-test/ I have not researched genes, but some of our members have an unusual variant. Consider...
  16. cyclinglady
    In theory, the small intestine can heal in just a few weeks. But the reality is that most celiacs take months or a year or so to heal. Why? Celiac disease is an autoimmune disorder like lupus or MS. It is different in that the trigger is known — gluten. No one knows what triggers other autoimmune issues. But once triggered, the body builds up antibodies. ...
  17. cyclinglady
    You are still within the acceptable range for hemoglobin. Why would you supplement with iron? Did you know that there are many types of anemia? Not all people with anemia are low in iron. Taking iron as a supplement could be dangerous (iron overload) if you do not need it. Ask your doctor to run blood tests if you think you are low in ferritin or are...
  18. cyclinglady
    Hi! Your earlier reports indicated that your celiac disease is still active. I think your sleep issues can resolve, but you will need to remain gluten free to allow for healing. Celiac disease is systemic and can wreak havoc on so many body systems outside of the GI track. Be patient! ?
  19. cyclinglady
    He can also get the celiac blood tests as well. If you go with a skin biopsy, make sure the dermatologist knows how to properly biospy the rash specifically for DH. https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/ All first-degree relatives should be tested even if they are asymptomatic. DH is celiac...
  20. cyclinglady
    What can I say? The above posters are correct. Getting a new doctor is probably the best advice. Your doctor sounds like she is too lazy to research an illness to better treat her patient. All of your symptoms could be attributed to celiac disease which is systemic!
  21. cyclinglady
    You are in a tough position. The TTG has been known to be elevated for several other illnesses. http://www.cureceliacdisease.org/faq/after-going-gluten-free-can-a-positive-ttg-mean-anything-other-than-gluten-present-in-my-diet/ It sounds like she is doing well on a gluten free diet since your home is gluten free, you rarely eat out, and...
  22. cyclinglady
    Welcome! Celiac disease has so many symptoms (over 200) and the ones you described could very well fit celiac disease. Did you get a celiac blood screening test prior to your biopsy? If your GI (or Dermatologist if you have Dermatitis Herpetaformis) went directly to biopsies, ask for the screening now before going gluten free as many things can destroy...
  23. cyclinglady
    Thanks! I did post the wrong link! https://www.beyondceliac.org/research-news/View-Research-News/1394/postid--94720/ https://www.glutenfreewatchdog.org/news/gluten-detective-consumer-test-kits-for-detecting-gluten-in-stool-and-urine/
  24. cyclinglady
    So glad that you are already feeling better!
  25. cyclinglady
    Ennis, I like that idea about the plastic keyboard covers. Excellent!
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