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cyclinglady

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About cyclinglady

  • Rank
    Advanced Community Member

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

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  1. Thanks for sharing with me. I really appreciate it. Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year! The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight. Our recent vacation to Europe was worth the risk as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places. Otherwise, we "dined" at markets or ate the food we brought from home. Thankfully, we did not get glutened (at least we don't think so!)
  2. Welcome to the forum! I sure hope that you are able to find a proper diagnosis. I am sorry that your firm is not very understanding about your medical problems. I hope you feel better soon.
  3. Adrien, Do you have celiac disease? I think it would have a greater impact (at least for me) if I knew you were diagnosed with it. On all food/restaurant reviews, I tend to side with those who have celiac disease than those that are just gluten free. Otherwise, thanks!
  4. I am the butter Queen! I can eat butter by the spoonful for a snack! Ask my family! I have used Kerry gold and had no issues. You might be reacting to casein (the milk protein) or you might be temporarily or permanently lactose intolerant.
  5. Most of us take a year or longer to really feel well. Why? There's a huge learning curve to the diet. Each one of us has different levels of damage and sensitivities to gluten. Because of intestinal damage, we also can have many intolerances (leaky gut/zonulin/it's real). It's hard to figure it out (especially when you feel like crap) and that's why healing takes so long even though science has proven that villi can heal fast. http://www.cureceliacdisease.org/faq/how-long-does-it-take-for-the-villi-to-heal-themselves/ I would strongly recommend NOT eating out for six months to a year. Did I say that? Yes! It's hard enough to shop for yourself, let alone let someone else prepare food for you. Every time you eat out, it's like playing Russian Roulette. I avoided eating out for a year after my last glutening, but successfully, survived a three week trip to Europe this summer. I researched like crazy before we left home. We only went to restaurants recommended by other celiacs. If we could not find one, I had my handy and attractive collaspible cooler with me. We purchased food from various grocery stores and made a picnic. It was worth the risk of eating out....who can resist a trip to Europe? But at home, when I need to be at my best (working pays the bills), I do not eat out. We do eat at a gluten free restaurant that is 100%. But there were times that even those gluten-free things did not go down well (gluten-free bread often has Xanthan Gum as a binder and it makes me sick still!). So, a sandwich out is great for hubby, but not me. I do best being grain free. Funny how we are all different. I don't have a gallbaldder either (I think celiac disease was the demise of mine personally, but no proof). Luckily, I don't have any digestive issues as a result. Give yourself time. I know it is hard to be patient, but that's the way it is. I promise, it will get better! So, do I go to a pie/coffee shop? No. That's too much flour or exposure for even a coffee with friends. It could be just mental, but it took me 3 months to recover from my last glutening (I don't even know what glutened me....) and another three to regain lost weight. I am very careful. I will dine with my parents, but I just order a soda (treat) or a glass of wine (don't drink until your gut is healed is my advice). Hang in there!
  6. Having only one positive (DGP Iga and I was not even IGA deficient, but the opposite high out of range) on the celiac panel, my GI proceeded with the endoscopy/biopsies. I did not even have gut issues, but I was anemic and had Hashi's too. Biopsies revealed a Marsh Stage IIIB. The celiac antibody tests are not perfect. I would get a opinion from a GI. Something is wrong with your daughter. Trust your gut (no pun intended). Keep advocating on her behalf!
  7. Jane Anderson has written some good information about this topic. (I am not affiliated with Jane.) Here is just article of many: https://www.verywell.com/shared-facility-or-equipment-is-it-safe-562780
  8. Welcome! Now you can look forward to improved health! 😊
  9. Are you kidding? Malt is derived from barley. Google it.
  10. Ah, so many of us have been told that our symptoms are "all in our heads"! I am glad that you finally are getting better. There is a huge learning curve to the diet on top of varying degrees of damage, so recovery is long for most. It took me a year to feel okay and another year to feel normal (I dealt with wildly swinging thyroid too). A severe glutening last year (unknown source but confirmed by antibodies testing), created some new problems (hives, rashes, itching, etc). The new symptoms have resolved thankfully, but that took about six months. Enough about me. My cousin has always had dark circles under her eyes since she was a kid (duh...she is gluten intolerant, but it could be totally unrelated). She is an expert at concealing them. Uses a yellow color (green for hiding red). My daughter and I use Physcian's Formula concealers. Google tips from makeup artists. Hopefully, your circles may diminsh as your health continues to improve. It may be related to allergies and not even celiac disease. Hard to say. Pepsi. Drink it as a treat. It is crap and you know it. But I get it. You have to have a vice as we have given up so much.
  11. Wow! That is a lot of intolerances! How long have you had celiac disease? How damaged was your villi? If you are new, it can takes a year or longer to heal and resolve intolerances that often accompany celiac disease. I just worry about products that can be swallowed accidentally. This includes sunscreen, lipstick, foundation, hand lotion, shampoos,etc. I do not worry about mascara. I use Gabriel gluten-free lipstick.
  12. Here are the tests: -Tissue Transglutaminase (tTG) IgA and (tTG) IgG -Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG -EMA IgA -total serum IgA and IgG (control tests) Note: -AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests -endoscopic biopsy - make sure at least 6 samples are taken VERY IMPORTANT: Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate. For blood tests consume gluten daily for 8 to 12 weeks. The endoscopy requires 2 to 4 weeks. (Source: NVSMOM -- 😊) Welcome to the forum and let us know how it goes!
  13. Not true. I was barely positive on the blood test, yet biopsies revealed a Marsh Stage IIIB (Moderate to severe damage). Antibodies can take months to build up in the bloodstream. That is why leading celiac disease experts recommend that you be on a gluten diet for 8 to 12 weeks prior to a blood draw. I am concerned that your doctor "said". Please get and maintain copies of your lab results. It might come in handy if you see another doctor in the future. 😊 If you need that firm diagnosis, consider doing the challenge longer or accept the results that may occur (even if negative, consider yourself a celiac....and will your GI do the same?????). Something to discuss with your GI. You are in a tough spot. I wish things were easier for you.
  14. Yes, you have to stand your ground! I only accept food from another celiac (and only smart ones!). I have two gluten free ladies in my community band who are gluten free for various health reasons. Only one understands how bad it can be for me to accept gluten free food from a non-celiac. The other nice lady is always trying, but I never take it. I was dining at a Polish restaurant with my family just last week (in Poland). The waiter went out of his way to provide some gluten free food for me even though I did not order anything but wine. Nice gesture. I just moved it around the plate and pawned it off to my brother. I'm pretty sure that the chef had no idea about gluten free and there was no way I could effectively communicate with him. Most people do not get it and I understand that!
  15. Get your celiac blood panel results from your doctor and make sure you had the entire panel. This is the entire panel list: Tissue Transglutaminase (tTG) IgA and (tTG) IgG -Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG -EMA IgA -total serum IgA and IgG (control test) Why do do I push for the entire panel? If my doctor did not order the entire panel, my diagnosis would have been missed. I test negative to the TTG tests even on follow-up testing (post severe glutening).