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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 have been around here a while. I assume that you have been on a gluten free diet all this time based on your previous posts. If the gluten-free diet is not working and celiac disease or NCGI (intolerance/sensitivity) was ruled out, consider another issue or disease. You need to determine the source of your symptoms. No one should feel sick for that...
  2. cyclinglady
    The teacher might be able to store a small gluten-free cupcake, clearly labeled and well wrapped (I have individual cupcake special containers), in the staff lunch room too.
  3. cyclinglady
    Welcome! Hang in there! It takes time to heal. Bet your doctor failed to tell you that! ? Why so long? It takes time to heal not just the GI tract, but other areas of the body that might have been impacted. There is often a steep learning curve to the gluten free diet too. Consider eating a more Whole Foods diet to aid in healing. Save the...
  4. cyclinglady
    Not so fast! About 30% of the population have the genes that could develop into celiac disease. But in a few actually do about 1% or so. So, genetic testing helps rule out celiac disease but it can not diagnose it. Blood tests and an endoscopy are the accepted means of diagnosing. just something to consider. ?
  5. cyclinglady
    Each of us has a different set of personal set of circumstances. You have to decide what is best for you. If you suspect DH, it can be biopsied and a positive is a diagnosis of celiac disease. So, if you should get glutened accidentally, it might be worth getting the biopsy. In the meantime, consider searching for a celiac-savvy dermatologist. I...
  6. cyclinglady
    @birdnflight -- Here is celiac disease testing information by the University of Chicago which is a well-written site and one of the US leading research centers. I wish you well! http://www.cureceliacdisease.org/screening/ Celiac disease is a genetic autoimmune disorder like lupus. The most commonly linked cancer is lymphoma, but that is really...
  7. cyclinglady
    When was your last celiac blood test conducted? You might just have a case of activated celiac disease. Here is more info on follow-up testing: Open Original Shared Link
  8. cyclinglady
    Glad we can reassure you. But, your big concern may be the fact that your not-knowledgeable doctor ordered a celiac blood panel after a two week gluten challenge when the standard is 8 to 12 weeks. Going gluten free again, prior to an endoscopy or a GI consult, may be another. If your blood tests are negative it will not rule out celiac disease. Please...
  9. cyclinglady
    Welcome! It might be prudent to make sure you had the complete celiac blood test panel instead of just the screening TTG: Open Original Shared Link Autoimmune disorder symptoms can overlap, so trying to make a diagnosis based your your symptoms is not possible. You might be right about asking for an endoscopy. It is a decision that...
  10. cyclinglady
    Too bad , your lame-sounding doctor advised you to go gluten free without testing you for celiac disease. Consider getting a new GI doctor who knows about celiac disease and get tested. Actually any MD can test you. The catch is you need to be on a gluten diet. Open Original Shared Link IBS really means "I Be Stumped." You might not have celiac...
  11. cyclinglady
    Yep. I would say yes. You can get glutened by kissing, being slobbered on by an adorable baby, dipping a spoon from a pasta pot into a gluten-free pasta pot, swallowing airborne gluten-containing flour while baking, grilling chicken on a grill that has had gluten on it (think burger buns), etc.
  12. cyclinglady
    Welcome Chicago Wendy! Has your doctor tested you for Crohn's Disease? Once you have one autoimmune disorder, you can develop additional ones. Just something to consider. Open Original Shared Link
  13. cyclinglady
    Welcome! This thread is pretty old, so I am going to offer help. Learn more about celiac disease testing here: http://www.cureceliacdisease.org/screening/ http://www.montana.edu/mountainsandminds/2012/fall/celiac.php You might research Mast Cell Activation Syndrome/Disorder: https://en.m.wikipedia.org/wiki/Mast_cell_activation_syndrome ...
  14. cyclinglady
    Squirmingitch, you must read a lot of detective/mysteries!? I did not think to look at dates. I do know for sure that I am not knowledgeable about DH, but most of my research indicates it is related to celiac disease. Glad you were able to shed new light on the subject. I am concerned that Razzle, who has stated in past threads that she has been on a...
  15. cyclinglady
    You may or not be able to tell if you have been glutened. Some celiacs are silent and sometimes your symptoms change. You will soon figure it out. Was that Golden milk certified gluten free? I think it is easier for newbies to just start with certified foods for piece of mind. Also Whole Foods are best. We all have intolerances to various foods...
  16. cyclinglady
    The enzymes to digest lactose (milk sugar) is released from the villi tips. If you have intestinal damage, you may be lactose intolerant (hopefully, it is just temporary). So, consider skipping the ice cream. Choose lactose free versions instead or dairy that contains the least lactose, like hard cheeses or yogurt. Also, a damaged gut can respond...
  17. cyclinglady
    Unfortunately, all celiac testing requires you to be in a gluten free diet. I am not sure how long you gave up gluten, but a two week challenge may not have been long enough according to this US leading celiac research center: Open Original Shared Link Antibodies can take a long time to build in your system. It sounds like you were just staring...
  18. cyclinglady
    Okay, I believe you. You can have DH without having celiac disease according to the government link below. About 10% of celiacs can have DH (rash and intestinal damage). But...the treatment is DH is the same -- a gluten free (gluten-free) diet. Like celiac disease, people with DH are gluten sensitive. It requires the same life-long gluten-free diet...
  19. cyclinglady
    I just want to add to Tessa's comment about the freezer. I have a big upright freezer in the garage. It is a lifesaver! Besides, the usual frozen meat, etc. I have some gluten-free prepared meals on hand that I made for those busy days when I can not cook. I also have a variety of cupcakes, cookies, etc. to grab when we are attending parties. I buy...
  20. cyclinglady
    I agree! It is one thing to prepare a meal in a shared kitchen (following safe practices), but to be in a shared bakery? No way! I ran into the same issue. A new bakery/coffee house opened in my town. The gluten-free baked goods were in the same case as the gluten baked goods. I suppose it could be done, but chances are no one wants to follow...
  21. cyclinglady
    Unfortunately, all celiac testing requires you to be on a gluten diet. The blood tests require 8 to 12 weeks. The endoscopy to obtain biopsies require 2 to 4 weeks. Open Original Shared Link Here is more about a gluten challenge (eating gluten after being gluten free for a while) in order to get tested: Open Original Shared Link Sweden...
  22. cyclinglady
    Here is my take. First, were you correctly diagnosed? Do you have all the lab results? Second, celiac disease issues can wax and wane. I have had two glutenings since my diagnosis four years ago. Each time was so different that I had to ask my GI to check my antibodies to confirm. The only consistent thing was the long recovery. Did I mention that...
  23. cyclinglady
    Well....congratulations does not seem to be in order. How about, "Whew! At least you know where you stand and now you can start to feel better!" Seriously, welcome to the club that you never thought you be in! I did not go to a nutritionist or dietician (hubby had been gluten-free for 12 years, so I knew all about the diet), but I would go. She...
  24. cyclinglady
    My ferritin level (iron store) was a 2 when I was diagnosed. I was severely anemic with a very low hemoglobin level (enough for docs to push for blood transfusions). My last test, some three years later was a 61. My lab range is 13 to 126. I would say your level is pretty darn good, but I am not a doctor. Consider ruling out a thyroid issue or just...
  25. cyclinglady
    I am still carrying backpack-like purse since my daughter was a baby. I like that my hands are free and I carry a bunch of stuff, including gluten-free snacks. I too, sometimes have to drop a used gluten-free cereal bar into my pack. Most are washable except for my fancier leather ones. I am a trash can, chauffeur, first aid responder, snack mom, germie...
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