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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
    Hi! I am not sure I read the results properly. In 2018, you tested normal for all the celiac tests except for the DGP IgG? If yes, it could be just an error. The antibodies tests for celiac disease were designed to help diagnose celiac disease and not really for monitoring diet. Why do doctors order them? There are not any other tests. So they...
  2. cyclinglady
    Hi! Your posting was overlooked (we are all volunteers). I am so sorry. Just want to find out if you received a diagnosis and if you are doing okay.
  3. cyclinglady
    Hi! I am so sorry that you are dealing with refractory celiac disease. You are fortunate to have access to a celiac expert! Recently, there was a mother who was searching for members who are also dealing with refractory celiac disease. You might try contacting her using the private message feature on the forum. Here is a link to her original...
  4. cyclinglady
    Hi! What were your lab ranges? Which test was considered positive? Celiac disease is a gluten intolerance. When gluten is ingested, the body starts attacking the small intestine causing damage. A diagnosis is usually confirm with biopsies via endoscopy by a Gastroenterologist.
  5. cyclinglady
    We use Stubbs (Texas) as our rub choice. The rubs and BBQ sauces are certified gluten-free.
  6. cyclinglady
    Did your doctor advise a gluten free diet?
  7. cyclinglady
    The MCV value on a CBC panel just means you have smaller red blood cells. As long as your hemoglobin is within range, you should be fine and you would not be anemic. I am not a doctor, but I have very tiny red blood cells. I have Thalassemia which causes me to always be slightly anemic (out of range hemoglobin). When my hemoglobin really dropped, they...
  8. cyclinglady
    What were the test results?
  9. cyclinglady
    Has she been diagnosed with celiac disease? If not, consider getting her tested. Keep her on a normal diet as celiac disease tests (all of them) require you to be a full gluten diet. http://www.cureceliacdisease.org/screening/ ADHD runs in my family. I would not settle for a quick fix (drugs) until I have thoroughly researched the subject....
  10. cyclinglady
    Unfortunately, all research money is going into helping to diagnosis and treat celiac disease and not studying kitchen tools. Most suggestions are based on common sense and years of real-life experience avoiding gluten. You can choose to manage your celiac disease by following the kitchen safety recommendations of every major celiac organization...
  11. cyclinglady
    Though using a gluten free lotion is important as many people tend to put their hands in the mouth, the camp is probably the culprit. Unless they have strict gluten free kitchen practices and the counselors oversee good hand washing practices, there is no way she can be safe. Did you tour the kitchen? I know that our local Girl Scout camp kitchen staff...
  12. cyclinglady
    Why not eat Vitamin C-rich fresh foods while taking it? Like an orange? Also consider adding iron-rich foods to your diet. But more worrisome is why are your ferritin levels low? Is your celiac disease active? When did you last get your antibodies checked? That is a good place to start. http://www.cureceliacdisease.org/faq/how-often-should...
  13. cyclinglady
    Maybe you do not have celiac disease or a gluten sensitivity. Maybe it is a FODMAP issue or another illness (like H.Pylori). Unfortunately, celiac disease testing requires you to be consuming gluten daily for 8 to 12 weeks prior to a blood draw or 2 to 4 prior to an endoscopy. You can remain on a gluten free diet or consider getting tested. Only...
  14. cyclinglady
    No, but I have passed out from the abdominal pain, vomited, experienced diarrhea, reflux, have been unable to digest any food for a month (hence the stews and soups) without pain, developed hives, activated my other autoimmune issues, etc. Everyone is different. The black spots may not be blood, but just undigested food. Maybe others can provide...
  15. cyclinglady
    I am so sorry that you are both dealing with refractory celiac disease. I sincerely hope that by living with you, she will be able to heal. I also hope that celiac.com members who are dealing with refractory celiac disease will respond to your post and offer their advice. I did just see a YouTube video from UC TV (University of California) on fecal...
  16. cyclinglady
    If you know you ingested gluten, you might as well wait it out. Chances are your celiac disease or NCGI has been activated and a doctor can not help you. Get plenty of rest, stay hydrated, and eat foods that are soft, mushy and easy-to-digest. If your symptoms do not improve in a week, call your doctor. I am so sorry! This has happened to all of...
  17. cyclinglady
    I am grain free, except for the occasional treat. I have been following a low carb, high fat diet for four years now. My diabetes has not progressed and I do not need any medications. My old doctor was skeptical, but since then even the American Diabetic Association has come around (they say lowering carbohydrates is just too hard for most people, which...
  18. cyclinglady
    This list, although found on a commercial site, is a pretty good start in helping to control blood glucose (sugar) levels in a diabetic (types 1 and 2). Replace foods high in carbohydrates (e.g. grapes or rice) with foods high in fat like full fat dairy, avocados, olive oil), etc. https://www.dietdoctor.com/low-carb/grocery-list https://www.uab...
  19. cyclinglady
    Yes. Keep eating gluten until you are sure all testing (including the endoscopy if you get one scheduled) is done. Keep doing your health research. ? It helps when advocating for yourself!
  20. cyclinglady
    Maybe. All celiac testing requires you t o be on a full gluten diet (daily) for 8 to 12 weeks prior to a blood draw and 2 to 4 weeks prior to an endoscopy. It takes time for antibodies to build up. Best to be conservative because you do not know if you generate antibodies fast or build them slowly. I did read that in some patients, they can heal in as...
  21. cyclinglady
    Just make sure you have been eating gluten daily for 8 to 12 weeks prior to the blood draw otherwise the celiac tests will not work.
  22. cyclinglady
    Welcome! You are correct. All celiac testing requires you to be on a full gluten diet for 8 to 12 weeks prior to a blood draw and 2 to 4 weeks prior to an endoscopy to obtain intestinal biopsies. Too bad your doctor is not celiac savvy or did not take the time to Google it. What else could he or she be missing? Yikes! https://www.cureceliacdisease...
  23. cyclinglady

    So stressed?

    cyclinglady commented on Shelby-101's blog entry in Shelby

    Read through the DH section of Celiac.com. There are great tips to help cope with the itching. I think you will find that a SUPER strict gluten-free diet helps with DH. That means very few processed foods and no eating out. Take risks once you have seen improvement. The Fasano diet is a good place to start. https://res.mdpi.com/nutrients/nutrients...
  24. cyclinglady
    The original OP was misdiagnosed. Instead he was found to have non-responsive celiac disease and not refractory. https://www.celiac.com/forums/topic/108687-even-gluten-free-foods-triggering-reaction-after-initial-glutening/?page=2&tab=comments#comment-956467 Maybe you daughter was mis-diagnosed? Non-responsive celiacs have responded to a...
  25. cyclinglady
    It sounds like you are on the right path. Talk to your doctor about your son’s health improvement. I like your idea of getting the genetic test too. That, along with the improvements on the gluten-free diet, should help get a diagnosis which can be useful once he goes to school.
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