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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
    ?! Thanks for Sharing!
  2. cyclinglady
    Let her choose. Best to check with local celiac groups or the app, “Find Me Gluten Free”. Let her read those reviews written by celiacs. If she is visiting, the goal is to have fun and keep her safe. Be supportive if she just wants to eat at home where she can watch the food preparation. My Texas Roadhouse days are over. I would not eat there for...
  3. cyclinglady
    You can develop celiac disease at any time. An old negative endoscopy does not rule out celiac disease. I would get a second opinion. I would also have a complete celiac blood panel run.
  4. cyclinglady
    There is no test for a gluten intolerance/sensitivity — only for celiac disease. If you are gluten intolerant (like lactose intolerant), it is thought to generate symptoms, but no antibodies to self. You would just have to trial the diet to see how you feel. I push for a celiac diagnosis, because it can be difficult to adhere to a lifelong commitment t...
  5. cyclinglady
    Wow! This is different. Running an IgA (Immunoglobulin A) test prior to a celiac panel when they suspect celiac disease? Some celiacs are IgA deficient making some of the celiac tests invalid (used as a control test). Others, like me are very high in IgA which can mean you have other autoimmune issues or illnesses. If you want to see if you have celiac...
  6. cyclinglady
    Start browsing through the children’s section of the forum. Not one lately has presented with comparable diagnostic issues like your son, but past members probably have. How positive were his blood tests? Some doctors will diagnose based on that and the genetic test , especially if they are very high. Some will have you trial the diet and check t...
  7. cyclinglady
    Welcome! I think running the full panel again can be good idea. But since you have undetectable IgA, consider pushing for the endoscopy. Some celiacs are simply seronegative. An endoscopy can rule out not just celiac disease but Other GI autoimmune issues. In the meantime stay on gluten until that GI appointment. Be prepared and research! ...
  8. cyclinglady
    Yes, he could have the gene and still be NCGS. But did you know that some celiacs are seronegative? Did you know that some celiacs never get a positive on the TTG (like me)? Is he IgA deficient? Ask for the full panel. Then consider pushing for the endoscopy because something is wrong. My niece had a celiac full blood panel and an endoscopy. Turns...
  9. cyclinglady
    Welcome! Your son may just have some early damage. The surface area of the small intestine is larger than a tennis court! Did you get a copy of the pathologist’s report? Your GI may have missed damaged areas, especially if he only took less than four tissue samples. If he has celiac disease, just limiting his gluten consumption is not going t...
  10. cyclinglady
    Labs vary. What were the lab ranges? Keep in mind that some 30% or more of the population carries the genes the could develop into celiac disease, but only a very few do. So, the genes test excludes celiac disease and does not really diagnosis it. Are you sure you are gluten free? Do you eat out? Eat oats? Live in a shared household? You might...
  11. cyclinglady
    Get the pathologist’s report. Make sure his GI took enough tissue samples!
  12. cyclinglady
    One week should be okay. I read once once (and now I can not find my source) that in as little as two weeks antibodies can be reduced significantly on a gluten free diet — for SOME people. Of course there are others like me who took a year or more to reduce my antibodies.
  13. cyclinglady
    You could be on the right track. Consider getting back on gluten and get tested for celiac disease. http://www.cureceliacdisease.org/screening/ Healing can take weeks, months or years to heal if you have celiac disease. It can be difficult to commit to being gluten free without a diagnosis. I wish you well.
  14. cyclinglady
    Any radical change in your diet could cause problems (e.g. not eating enough). Why are you on this diet?
  15. cyclinglady
    He could go back on gluten and get the rest of the panel (EMA and DGP) because it can be easy to miss damage areas in the small intestine which is vast — like the size of a tennis court. An elevated TTG could be another illness like Crohn’s, so just tuck that away for now. I would suggest getting a copy of the GI report and the pathologist’s repor...
  16. cyclinglady
    Exactly which celiac blood test were done? Not all celiacs, especially small kids, test positive to the TTG. Ask for the DGP and EMA instead.
  17. cyclinglady
    Yes. Stick with plain rice. Non-processed or minimally processed foods that odds are are not processed anywhere near gluten (e.g. milk, plain yogurt, butter, nuts in a shell). I do not know why Gatoraid is on the list. I supposed Dr. Fasano, being a PED GI, had concerns about sick kids in terms of electrolytes or something. Kids will drink it....yuck...
  18. cyclinglady
    Welcome! Did your doctor also order the DGP and EMA celiac tests? Not all celiacs test positive on the TTG. You get kids seem to do better with the DGP IgA. Celiac disease should not be dismissed simply because she doesn’t have GI symptoms. I did not. Just anemia and I had some pretty severe damage.
  19. cyclinglady
    I do not have DH, but I do have celiac disease. I also have many food intolerances and allergies. Please research allergy testing. I think you will find that results are not very accurate. If I recall it is around 50%. Consider, after experimenting with the Fasano diet (excellent advice), keeping a food diary.
  20. cyclinglady
    First, let me tell you that I do not suffer from DH and I am not a doctor. That said, I have been on this forum for almost five years and have read member postings about DH. I strongly encourage you to browse through the DH postings for tips and advice (like GFinCD suggested). Those members (like SquirmingItch) live with DH daily. What I have learned...
  21. cyclinglady
    Welcome! Celiac disease and Dermatitis Herpetiformis (DH or Duhring Disease) is the same thing. One effects the small intestine and the other the skin (or both). It all depends on the individual as to how they present. Sure, you can take Dapsone for the DH, but it has some seriously HARSH side effects. A gluten free diet, (super strict) can keep DH under...
  22. cyclinglady
    Just be patient, hard I know! ?
  23. cyclinglady
    Thanks Karen!
  24. cyclinglady
    Anemia was my only symptom when I was diagnosed (I month or so later, I was diagnosed with osteoporosis....little did I know). So, you could have celiac disease. Four weeks off gluten can impact test results, but it might be worth a try. But I personally, would just remain gluten free until the baby is weaned. You can also do a gluten challenge later...
  25. 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...
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