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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
    You might not have received the full celiac panel or you could have developed celiac disease since then. Best to test and rule out celiac disease. If everything is negative, you can try the gluten-free diet. Why really bother? celiac disease is a genetic autoimmune disorder that is triggered by gluten and set off by something in the environment...
  2. cyclinglady
    Before going gluten free, celiac experts recommend getting tested first as celiac tests require a person to be consuming gluten daily. Going gluten free for as little as a few weeks can cause false negatives. Read more about celiac disease from the University of Chicago. They have an excellent website! Open Original Shared Link
  3. cyclinglady
    Thanks! I should have been clearer. Here in the states, my families' particular health plan and provider does not allow a GP to order the full panel. Only a GI can do it. I found this out when my parents went in for celiac disease testing. ?
  4. cyclinglady
    Yes. Everyone presents differently. This is where doctors can get hung up. Many think that you need to be a kid who is malnourished. But old heavy people can have celiac disease too. It is amazing how the body copes!
  5. cyclinglady
    Hey all, based on the OP's reference to his/her "Mum" passing (please accept my condolences, Alanandro), I am guessing he/she is in Great Britian or other English-related country. The NHS probably only authorizes the TTG test. So, in this case, best to wait for the TTG result and then he/she can decide to pay cash for the balance of the panel (going outside...
  6. cyclinglady
    I agree with Gemini. Get her retested (blood test) but make sure she's eating gluten daily for a month or longer. My daughter tested negative for celiac disease. Because she had been gluten light (both hubby and I are gluten free and our house is gluten-free too), I made sure she ate gluten every day for three months. I bought pre-packaged stuff...
  7. cyclinglady
    So, no mineral (e.g. iron) or vitamin deficiencies? I am not a doctor, but maybe you should google restless leg syndrome. I hope you find relief!
  8. cyclinglady
    If they are going to blame your leg pain on celiac disease (which you should be healed after 10 years of a gluten free diet), it should be confirmed that your antibodies are very low. When was the last time you had follow-up testing (a full celiac blood panel) to confirm dietary compliance?
  9. cyclinglady
    I think this is hard to answer. Many of us have intolerances as a result of Celiac Disease. Some are temporary and others seem to be permanent. Mixes use a blend of flours or just one flour (e.g. rice which makes for a grainy texture). They also incorporate gums to replace gluten for binding that many can not digest well. There is always the possibility...
  10. cyclinglady
    Welcome! It sure sounds like celiac disease. Best to get tested. Here is more information. Like SI stated, push for the complete panel if possible. They should be looking for anemia too, if they also include a CBC blood test. Open Original Shared Link Open Original Shared Link Keep eating gluten until all testing is done!
  11. cyclinglady
    Welcome! I am sorry that you are so ill! Three months into the gluten-free diet is not long -- especially when you are dealing with neurological issues. Those typically are the last to heal. Try searching through the forum about gluten ataxia. I think there are some recent postings. Your doctor should rule out Multiple Sclerosis too (my MIL had...
  12. cyclinglady
    Celiac Disease is an autoimmune response triggered by Gluten. That means while gluten might be in your intestine and past in a few hours or days, the autoimmune response can last for weeks, months or longer! Most folks here see some good improvement within six months of being gluten free. It can take a year or longer to completely heal from all the damage...
  13. cyclinglady
    So, exactly which celiac antibodies tests were taken? Do you have copies? Was it complete? I ask because I only tested positive on the DGP IgA test and negative to the TTG (even on follow-up testing), yet I had moderate to severe intestinal damage. Your GI was right. Some patients have had negative blood tests, yet positive biopsies (not common). ...
  14. cyclinglady
    O am sorry that you are sick! When was the last time your doctor ran a complete celiac antibodies panel? Make sure the DPG test is given as it seems to be better monitoring dietary compliance. I don't know if my personal story would help, but I got glutened in July. Symptoms were very different than when I was first diagnosed (anemia). Six...
  15. cyclinglady
    Exactly what tests were negative for celiac disease? Are you sure you had the complete panel? I personally test negative on the standard screening TTG. I do think you should see a GI ASAP! Ask to have your gallbladder checked too (based on your symptoms). I hope you figure it out.
  16. cyclinglady
    It is hard to explain to others. Even family often does not get it. Thankfully, we have this forum. There's a local group in my area that meets monthly but my busy schedule just does not permit a visit. I've made some firm friends on the forum and have received wise advice that helps me to cope. So, come on here to vent, whine and yes, even have...
  17. cyclinglady
    I am sorry that you are sick! Maybe, just maybe, you were not glutened. It's hard to tell during the first few weeks of starting the diet and healing. Remember, your antibodies are probably still pretty high, meaning your body is still attacking itself. It can take weeks to months to feel better. Some take a year or two (that would be me). The...
  18. cyclinglady
    Please accept my apologies if you think I was attacking nurses. My grandmother, Aunts and cousins are nurses and are/were dedicated to helping people.
  19. cyclinglady
    Welcome! It is advised by all the leading celiac researchers to test to celiac disease (which is not an allergy or a food intolerance but an autoimmune disorder like MS or lupus) before going on a gluten free diet. Here's a list of the tests: http://www.cureceliacdisease.org/screening/ I can not answer your question about pain, etc. There are...
  20. cyclinglady
    Who knows if you have celiac disease (let me get my Magic 8 ball). Kidding aside, the only way to know is to get back to eating gluten and ask your doctor for a celiac blood test. Here's more information: Open Original Shared Link Why bother getting tested? It's a genetic and first-degree relatives should be tested if you were positive. It's...
  21. cyclinglady
    Karen knows her stuff. She even attends celiac conferences (wish I could...someday). Plus, she has mastered the art of getting her kids to consume veggies! That is no small feat!
  22. cyclinglady
    Karen knows her stuff. She even attends celiac conferences (wish I could...someday). Plus, she has mastered the art of getting her kids to consume veggies! That is no small feat!
  23. cyclinglady
    It is the ONLY autoimmune disorder that is for sure is genetic!!!!! What they do not know is that if you have the genes, what are the causes to "turn it on". Celiac researchers recommend that all first-degree relatives get tested even if symptom free. Yes, you can be symptom free and have celiac disease! So, keep giving your kids gluten daily for 8 to...
  24. cyclinglady
    Sometimes, I write to help not just the OP (you) but others reading! I have Hashi's too. When it acts up, there's no controlling it. Before my CD diagnosis, I had two years of crazy roller-coaster hormones due to going through the menopause window and undiagnosed celiac disease. I was hyper and hypo which drove my doctor crazy. Funny thing is...
  25. cyclinglady
    Karen is right. Your gut is damaged. I will repeat....your gut is damaged. Would you eat what you described after a bout of flu? No. Chances are you would eat some soup or jello. Something you could keep down. You are sick. So, take our advice and eat simple whole foods that you prepare yourself. Those brats, I bet have lots of additives ...
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