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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
    First, do you have celiac disease? Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination? If you haven't had the test, you should ask your doctor for one. You could also also ask for a follow-up endoscopy to see if you intestines have truly...
  2. cyclinglady
    Annual celiac antibody testing is, in my opinion (and based on what celiac researchers have published), is critical, especially for a 12 year old. Life is going to get harder for her. Peer pressure is huge (I have a 15 year old daughter), and remaining diet compliant can be tough. In Dr. Fasano's, Gluten Freedom, he discusses a young patient who...
  3. cyclinglady
    Perhaps you should consider asking for a GI referral. You might just skip the blood tests and go directly to an endoscopy/biopsies while you are still consuming gluten. It is the "gold" standard for a celiac diagnosis anyway! Here's the deal with going gluten free. You can do it. It costs nothing, but you must give it six months or longer. You...
  4. cyclinglady
    I buy Udi's gluten-free bread. But I feed it to my gluten-free hubby. Sure it's gluten free, but I discovered that I react to the Xanthan Gum that is used to replace what gluten does to bread (that stretchy binding thing....). It does not bother my hubby at all! I stick to gluten-free flours and use other gums. But the best thing is to stick to whole...
  5. cyclinglady
    @notme! You bet I'm going to all the Back to School Sales. Some of my little soft coolers are getting grubby and Oxyclean is not able to do the job! I do like the ones that are a little pricier when I'm sneaking in food into a restaurant. Somehow, a hard-sided Igloo looks out of place!
  6. cyclinglady
    Congratuations! You and 30% of the population carries the genes to potentially develop celiac disease. A gene test just excludes celiac disease but can not diagnose it. Have you been on a gluten free diet? Is that why you were not able to take the standard celiac blood test?
  7. cyclinglady
    Back to Dr. Google for you! A histamine intolerance is not a true IGE mediated allergic reaction. Read up! It does often (like many intolerances) occur with celiac disease because the small intestine is damaged. It can resolve once the gut has healed. celiac disease antibodies can take time to build up (in your blood stream for the test or...
  8. cyclinglady
    Ugh! So, you have early stages of celiac disease and that was after being gluten light? It is a shame that your doctor is not comfortable about giving you a formal diagnosis because you don't have enough damage! Time for a new GI. You can also as for another pathologist to read your biopsies, but seriously....... Have a conversation with your current...
  9. cyclinglady
    Couldn't have said it better!
  10. cyclinglady
    If you are going for an endoscopy, then please ask for a celiac antibodies COMPLETE panel. This will help you determine if you have been diet compliant (zapped by hidden sources of gluten or accidental cross contamination) and if your doctor misses the (possible) damaged areas during the procedure. That way you can rule out celiac disease and THEN worry...
  11. cyclinglady
    I just traveled three weeks this summer in Europe (Eastern). Do not trust that the airlines will remember to load a gluten-free meal for you. There is a 50-50 chance that they will not (in my experience). We packed ONLY carry on. Still found plenty of room to stash some emergency food. You should be able to find food within an International airport....
  12. cyclinglady
    Great points! We use the "Find Me Gluten Free" app a lot (post too). We look for reviews created by celiacs. I probably sounded like Debbie Downer when I posted above, but it is possible to go out and dine at restuarants, it just takes a little research and time to the restaurant staff.
  13. cyclinglady
    Your best bet is to bring your own food (bars, nuts, dried fruit, etc.). Confirm with the airline about The availability of a gluten-free meal, but don't count on it.
  14. cyclinglady
    Why would your PCP go against the advice of leading celiac researchers and the American and British GI Associations? The endoscopy/biopsy is still the gold standard for diagnosing celiac disease. I understand your daughter's situation, but I would get a second opinion from a GI before going gluten free. Open Original Shared Link Open Original...
  15. cyclinglady
    Here is another point. My hubby went gluten-free per the poor advice of his GP and my allergist. It worked. A tough first year, but he got well. Thirteen years later, I got diagnosed with celiac disease. I was shocked! ?. Does he have celiac disease? We will never know because we can not afford to have him do a challenge. He refuses and I can not...
  16. cyclinglady
    Freize is right, you need to think about your environment. Based on that a study I posted for you, you will note that the patients who were diagnosed with refractory celiac disease and THOUGHT they were diet compliant found that they WERE NOT diet compliant. How is this possible? This is way out there, but unless you are growing all your own food...
  17. cyclinglady
    Your celiac results are in the normal range. Based on my research do not expect them to hit a zero! That is not how they work. Do you have celiac disease? You will never know unless you do a gluten challenge and get retested as Raven has suggested. Open Original Shared Link I am not a doctor, but you can research Mast Cell Activation Disorder...
  18. cyclinglady
    Just wanted to add, that when my friends or family want to eat at a restaurant that I am not sure about, I bring some snacks and then order a drink. It is all about the company, not the food.
  19. cyclinglady
    Based on the information you have posted today, the most likely probable reason for your being ill is that you are getting glutened! Here is a biggie....does your hubby brush his teeth prior to kissing you? Seriously, it can happen, but going out to eat a lot.....that can be just as bad! We eat at restaurants that have been approved by celiacs (websites...
  20. cyclinglady
    I got glutened last summer. Heck, I do not even know what glutened me, but I suspect two products that my gluten-free hubby never consumed (he is my canary). My symptoms were so different from when I was diagnosed (just had anemia then). My GI thought I had SIBO or something else, but I asked for a celiac panel. Yep, I had been Glutened! Took me three...
  21. cyclinglady
    You are right that the next step is an endoscopy, which still is the "gold standard" in diagnosing celiac disease. However, for various reasons the endoscopy is not done because financial contraints or long wait times (up to a year!), or too ill to proceed. You have two positives. You only need one positive to move forward. The TTg tests do...
  22. cyclinglady
    Oh, Trish at the GlutenFreeWatchDog tested Planter's honey roasted peanuts three years ago. The can did not state gluten-free, but showed no gluten ingrediants (per Kraft policy). Test result: less than 5 part per million which is pretty much gluten-free.
  23. cyclinglady
    What if it were something else that glutened you? Maybe you ate too much of a good thing? I once (three months post dx) ate too much gluten-free fried chicken, vomited, passed out and fractured my back (osteoporosis) in the process. Paramedics, ER doc and Cardio all thought I was having a heart attack. No. It was sheer gluttony and bad bones. Not good...
  24. cyclinglady
    Research with KP and find a celiac-savvy GI in your area ( read the biographies). and ask your PCP/GP for a referral to that specific GI (not his buddy). Ask the GI for the rest of the celiac panel or proceed with an endoscopy/biopsies -- 4 to six. Keep eating gluten daily until all testing is complete. Document and request in writing. Do not worry about...
  25. cyclinglady
    I think that we have to remember that celiacs often develop intolerances due to our damaged guts. Our guts do not ncessarily heal either (usually adults) for a variety of reasons even if their symptoms improve (see links below). Nuts are just plain hard to digest. I can not tolerate almonds, but can handle walnuts and cashews in small amounts...
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