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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
    Positive biopsy and blood work? It sure sounds like your doctor made the right diagnosis. Let me tell you my story. Diagnosed after going for a routine colonoscopy because I am over 50. GI saw my chart and noted that I was anemic. I have a genetic anemia and I was iron deficient as well. I lived like that my entire life. But my wise GI ordered...
  2. cyclinglady
    Hi Sofie! Listen to KarenG. We both had iron deficiency anemia when we were diagnosed. Plus, I have Thalassemia which is a genetic anemia on top of the iron deficiency anemia. Dumping iron into your system is not the solution. You need to be seriously gluten free. You are probably unknowingly damaging other parts of your body....like your...
  3. cyclinglady
    I can tell you that last week, I picked up and delivered 30 boxes of Costco pizza to a hungry marching band. I lived! Seriously, just wash your hands after handling. Ennis is right. Do not take a big sniff of the boxes in case there is any residual flour. It took days for my van to air out and I did lay some old beach towels to protect my interior as...
  4. cyclinglady
    Have you ruled out the common Keratosis Pilaris (KP) also know as chicken skin? https://www.aad.org/public/diseases/bumps-and-growths/keratosis-pilaris
  5. cyclinglady
    Welcome, Josh! You have two choices: 1) go back on gluten and get tested. This will help confirm if you have celiac disease or not. Some 10% of celiacs are seronegative. You should confirm if you had the complete celiac panel. I personally am only positive on the DGP IgA, even on follow-up Testing. Okay, if you have NCGI, the treatment is the...
  6. cyclinglady
    Power plant Superfood Cafe is 100% gluten free. It is centrally located in LA. Use the website “Find Me Gluten Free”. Look for the reviews written by celiacs because there are a lot of people who eat gluten free and really do not have to worry as much! Kirari Bakeshop is in Redondo Beach on Pacific Coast Highway and they are also dedicated. ...
  7. cyclinglady
    Welcome! Hopefully your doctor advised you to keep eating gluten until all testing is complete (biopsy results are in).
  8. cyclinglady
    Stanford is the only celiac center in Northern California: https://stanfordhealthcare.org/medical-clinics/celiac-disease-program.html but... any medical doctor can run a celiac blood panel. If positive on any one of the tests or if you still suspect celiac disease (some 10% of celiacs are seronegative), you should consult with a Gastroenterologist...
  9. cyclinglady
    I can not help you with the Candida issues (except to advise reducing sugar from your diet and talk to your doctor about antifungals). I can tell you that my folate and B vitamin levels were off the chart. No, I did not have cancer, which is what you will find if you google). Yes, I have autoimmune issues and maybe I have the MRTHR gene (never tested...
  10. cyclinglady
    It could be celiac disease related or not. The fact is her antibodies are still elevated. They have come down dramatically (great job!) and she has had some intestinal healing, but she is not completely healed. She probably needs more time. She is under a lot of stress which is known to affect menstrual cycles even excluding celiac disease. She has...
  11. cyclinglady
    How about gluttony? Three ears? That much corn can be hard to digest for anyone, let alone a celiac with a damaged gut. I hope you feel better soon!
  12. cyclinglady
    I am sorry that your daughter (and you) are experiencing this. After diagnosis, celiacs need adequate follow-up care. When was the last time her antibodies were checked? Have they come down? Are they still very elevated? This link verifies what I said: http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/ By testing...
  13. cyclinglady
    I would stick to a very basic gluten-free diet as recommended by Dr. Fasano and other celiac experts. It would not hurt for a short amount of time and might get him through his exams. This is the study about dealing with Trace Amounts of Hidden Gluten (not saying your son has non-responsive celiac disease) Look at Table 1 found a few pages into the...
  14. cyclinglady
    Please follow the advice of celiac experts and get your daughter tested before going gluten free, Your doctor, like many, is woefully misinformed. You should be tested too (all first degree relatives), even if symptom free, and especially since your mother was recently diagnosed. Learn more about testing from the University of Chicago. They are one of...
  15. cyclinglady
    My daughter, who does not have celiac disease, is also in the 11th grade. Since you said exams instead of finals, I assume you are not in the US where a 504 plan can accommodate anyone with a disability (celiac disease counts). This includes tudors, more time to complete tests, etc. Do you have a comparable plan? Honestly, our school lunches (public...
  16. cyclinglady
    No kidding! I do not cook in the hotel room beyond using the microwave to nuke a potato. I get by on mostly cold food. It is not forever!
  17. cyclinglady
    They found my niece’s Crohn’s with a pill camera — way beyond the reach of both scopes. But my niece was 19. Not sure if they would consider a pill camera in a younger child. Happy that your doctor is willing to work through all this!
  18. cyclinglady
    I am sorry that your son is ill. It is time to have his antibodies checked to see if they are coming down as recommended by celiac experts as part of follow-up care. You might think he is gluten free, but maybe he is getting hidden sources of gluten. http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/ If his result...
  19. cyclinglady
    Consider Graves Disease. My mother struggled with it. She did not have all the classic symptoms of Graves, but she did end up with permanent eye damage (she sees double). My cousin had it even more severe. Besides eye muscle pain, she had the classic eye budge (Grave’s affects the muscles in the eye and/or other muscles in the body producing weakness)....
  20. cyclinglady
    I can not tolerate Xanthan Gum which is in almost all gluten-free baked products. Weird, but true. It still bothers me, but not my hubby. So, I can buy commercially prepared bakery items for him but I bake my own for me (and share). I normally just skip bread, but I bake cakes and cookies using guar gum instead. In the beginning I keep thinking...
  21. cyclinglady
    What? Traveling with a toaster? Too much bulk! Just order some toaster bags off Amazon. They were made originally to make grill cheese in your toaster. They can be rinsed and reused many many times. Pop the bread into the bags and ask staff to put them into the toaster. Provide a proper explanation. I like talking to the chef besides staff. It takes...
  22. cyclinglady
    Would that be Fibromyalgia? I am sorry that you are feeling so much pain. I hope the prednisone works for you. I think Fibromyalgia is a separate issue from celiac disease.
  23. cyclinglady
    I would not fret. Has she improved? That is what counts. In my research, celiac experts have published studies that indicate that the DGP is a better indication of dietary compliance. Some say the TTG is useful. Some say that the celiac tests should only be used for diagnostic reasons and not compliance. The reality is that not much research has been...
  24. cyclinglady
    All drugs, including over-the-counter, can have serious side effects (I am not talking about gluten exposures). Each individual must decide (with a doctor’s input) what is best for them. I think we have become a little too careless and dependent on easy access drugs. Some have been around forever (like aspirin) but that does not make them safe. I t...
  25. cyclinglady
    Yep, we just need to soldier on. That is what I try to teach my daughter. When I want to vent, I find that my celiac.com friends not only can relate, but listen. They give good advice too. I confess that I go out of my way to help her (like do her chores..) I know my parents took a tougher approach with their kids and we turned out fine. I just...
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