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About cyclinglady

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    Advanced Community Member

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    CD diagnosis: 3/2013 via antibody testing and biopsies
    Hashimoto's Thyroiditis, Diabetes, Osteoporosis, Thalassemia
  • Location
    Orange County, CA

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  1. Couldn't have said it better!
  2. 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 about the possibility of other AI issues. I did this last summer. I got really sick. My GI thought SIBO right off the bat. But I asked just to be tested for celiac disease. Sure enough, I had elevated antibodies. No need to test for SIBO or anything else at that point. I just waited a few months for symptoms to subside. Good Luck to you!
  3. 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. Chips and typical junk food clearly labeled, even fruit. Print or load Celiac travel cards with you in all the languages you will need. They are free. Google it. Found these handy (not only in restaurants) but in the markets when we could not read labels but the staff could read them and Help us to make gluten-free choices. amazing how you can communicate without knowing the language. A few words like "thank you" in their language go along way (so does Google Translator). Never met anyone who was not willing to help. I carry a collapsible cooler that I pack with food and bags of ice to eat on then plane or right at my arrival or connection. I take extra zip lock baggies with me. Sometimes TSA will let you through if the ice is still hard (not melting). Some will make you toss them then I just ask a restaurant to refill my ziplock baggies after passing Security. I also carry a doctor's letter on my phone to show I am celiac, but no one has ever asked for me to present it. Even though I carry a "third" piece of luggage on board, I have not been stopped. Both that and my day backpack fit under the seat. I use this cooler as needed through our trips. If not, it fits in my backpack.
  4. 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.
  5. 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.
  6. 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.
  7. 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 blame him. He knows he will be very sick! The point? I am so lucky that we both can not have gluten. I never worry about him making me sick or vice versa. We made the house completely gluten free for 1) our health and 2) the fact that our kid started helping in the kitchen. Kids make mistakes and I personally need a safe haven. She wants gluten? I buy prepackaged stuff and she takes it to school. All parties and events at my house are gluten free. Lots of work, but we stay healthy. She does not have celiac disease. When she is preparing for a celiac test, I send her on the porch to eat cookies or bread or whatever floats her boat. We travel in a gluten-free RV. I have five sizes of ice chests. We just have to be prepared for any event. How can we live this way? We love feeling good.
  8. 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, you don't really know if it is gluten free. In the US, we do have laws to help protect our food supplies (no perfect, but a start). I can not speak for India. For example, what about your soy? It can be contaminated by the farmer as it is often rotated with wheat. Here is an article by Jane Anderson who has celiac disease. She is very strict as she has DH (celiac rash), but she cites Trisha Thompson who tests foods for gluton contamination, The gluten-free WatchDog (like Consumer reports). She found that soy which is naturally gluten free, but can be cross contaminated by wheat: so, start thinking about your food supply. As far as a negative TTG IGA or TTG IGG? I test negative to both. Only the DGP IGA has ever been elevated in my blood tests (even repeats), yet I had a Marsh Stage IIIIB on my biopsy. Have you had a DGP IGG? (I do not see this in your posting). These additonal celiac tests might help you feel confident that you have celiac disease and not something else that is damaging your villi. But remember, some folks have celiac disease even with negative blood. I am not IGA deficient, so this is an area I have not researched. Not to mention that some celiac researchers do not think that the celiac antibodies tests are good for diet compliancy. I wish I had better answers for you. Try a grain free, whole foods diet of meats, fish, eggs, and vegetables for a while. All food prepared by you. Who cooks your food now? Is your home gluten free? Cross contamination at home? Kissing a loved one. We had a doctor with celiac disease who was getting glutened by her little children who were consuming gluten!
  9. 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. I am not a doctor, but you can research Mast Cell Activation Disorder. It could be contributing to your health issues (but so can celiac disease).
  10. 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.
  11. 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). Just because that offer a gluten free menu does not mean that they understand about cross contamination.
  12. 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 months to recover and another three to regain lost weight. Yeah, I picked up another health issue on the way (hives, rashes, swelling, itching, ab pain, vomiting, and fainting.) I did not eat out for one year! Only this summer, I did. Was it worth the risk? You bet! Three weeks in Europe. Fortunately, 7 days was on a cruise and Celebrity did a great job. Italy was so celiac-savvy and I did my research and found places recommended by other celiacs in Spain, France and Poland. If not, we bought cold food at the market and had a picnic. I am home. Will I eat out? Probably not. I have a busy Fall ahead of me (High, marching band, volunteer positions, house projects, and work). I can not afford to be sick. Ah, I will eat out this Thanksgiving break. My favorite restaurant is 100% gluten free in Tucson, AZ. Maybe I will discover another gluten-free restaurant closer to home!
  13. 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 not need to be positive for a diagnosis (which requires a positive on an antibodies test which you had and an endoscopy). My TTg tests were negative and I only had a positive on the DGP IGA, yet biopsies revealed a Marsh Stage IIIB (moderate to severe damage. Unless your PCP is a celiac expert (unlikely), I would insist on a GI consult. Please find one who is celiac-savvy. keep eating gluten daily until all testing is complete (biopsies done). You never know if lab results are going to get lost. Besides any celiac testing requires the patient to be on a gluten diet. In the meantime, keep on researching. Only YOU can be your best health advocate!
  14. 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.
  15. 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 to overload with a damaged gut. Maybe you did get some contaminated nuts. Afterall, anything processed is suspect. What might be well tolerated by some, might be too much for others. We all have our various levels of gluten intolerance. The old 20 parts per million is just a guideline, but science does not really know (lack of funding......doe anyone really care enough to find out?) My hubby has been gluten-free for 15 years. When I was first diagnosed, I tried to eat the gluten-free foods that I normally gave him. Problem was he was healed and I was not. Things like Xanthan Gum in commercial processed gluten-free breads make me feel like I have been glutened, but it is just (and still is) an intolerance. So no bread for me unless I make it myself using a different gum. Too lazy, so I do without. so, ask your doctor if you really want to know or lay off the cashews and test them again in a month using a certified gluten-free nut. I wish this was easier!