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dinali63

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About dinali63

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  1. Thank you for the replies! The tea is an English brand PG tips. I had it in England a couple of years ago before my diagnosis and really liked it. I found it in the grocery store here, and thought it would be safe. It makes sense that it could be something in the manufacturing process. I tried to call the company but didn't get through. I sent an email, but didn't hear back yet. I'm very strict with my diet and have been feeling great. This is the only new item that's been introduced in the last couple of days and yesterday I had two cups. Today I'm miserable so I'm taking it out of my diet and I'll see if I start feeling better. I know that I'm very very sensitive to gluten and have had severe reactions if I get even the slightest bit of gluten. I felt this way last holiday season when I had a flavored coffee (one I thought was gluten free, but maybe wasn't brewed correctly in the shop). I'm going to try the tea suggested and stick to ones where the company states it's gluten free. It's amazing to me that I forgot how bad I could feel with the slightest bit of gluten in my system. Unfortunately I should have called and made sure before I tried something. It sometimes is so hard to keep checking when it seems like everyone around me can eat or drink what they want.............. Thanks again for the help!
  2. Hi! I was diagnosed with celiac over one year ago and have been feeling pretty well. However, in the past week, I've gotten severe gastrointestinal symptoms that today have me staying in the house. The only difference in my diet is that I tried a new black tea. Can black tea (not flavored) contain gluten? I saw a nutritionist in NY that told me I would be ok with any plain tea or coffee? Any advice would be GREATLY appreciated!
  3. I just saw your posting and wanted to add that my family and I travel to Disneyworld at least twice a year. Both my son and I have celiac disease and Disney is wonderful! Any restaurant on any Disney property will work with you (even on Disney's Boardwalk property). I would suggest telling the server that you would like to speak with the chef because your daughter has a severe food allergy (that gets their attention). The chef will then explain what can be done with the dish your daughter wants in order to make it gluten free. In the Animal Kingdom Lodge, I went to BOMA, and the head chef took me for a tour of the buffet to point out what I could have and then cooked me a steak to order (that wasn't in the buffet). They even had gluten free brownies for dessert and gluten free pizza in the parks. Other than that, there are chains in Orlando that have gluten free menus. Outback steakhouse, Carrabba's Italian Grill, Bonefish Grill are a few. There's a book called Triumph Dining that lists restaurants: B-Line Diner, Buca di Beppo, The Capital Grille, PF Chang's, Roy's, Ruth Chris Steakhouse, Seasons 52, Uno Chicago Grill. I have eaten at all of these (they have them in other cities in the US too), and have had good experiences. I just make sure that I speak with the manager before I order. Hope you have a wonderful trip!
  4. I am vacationing in the Berkshires and went to dinner at Spice in Pittsfield, MA. What a wonderful experience! We called ahead and were told that gluten free was no problem to accomodate. When our server came to the table, she asked who had the gluten allergy and I told her that it was my son and me. She then told me to choose what I wanted from the menu and the chef would make sure that it was gluten free. The salad I had was terrific as well as the main course. When it was time for dessert, the manager came to the table and offered that the chef would come up with a gluten free dessert, if I wanted to try it. Of course after the great experience I was having so far, I agreed to try the dessert. It was a poached pear with a choice of ice cream or sorbet------the chef created it especially for me since it was not on the menu. Overall, this has been the best experience I've had in a restaurant since being diagnosed with celiac disease 8 months ago. Their website is www.eatatspice.com. They also made my son feel really special and made no problem out of making the kids' menu gluten free for him. Highly recommended for anyone visiting or living nearby..........
  5. I wanted to mention that there's a fantastic gluten free bakery on Siesta Key....right behind Capt. Curt's restaurant. It's called Island Ice cream and Gluten free bakery and their desserts and breads are delicious. The key lime pie is the best I've ever tasted! The only ice cream that's gluten free is vanilla, but all their baked goods are gluten free. The owners are so nice and fun to talk to and really understand since one of them is gluten intolerant. As far as restaurants, there are quite a few chains that have gluten free menus. I ate at the Outback and had no problems, the staff was very helpful. Hope you have a great time on your trip!
  6. I'm pretty new at all this too, but definitely when I get glutened the reaction has become stronger and the one time it happened recently, I vomited the food that I thought could have been glutened. I ate at a restaurant that had a gluten free menu, but the food must have been cross contaminated. I started feeling ill about a 1/2 hour after eating and felt ill all evening and then got sick around 11:00. I think everyone reacts differently, but I would be concerned that you got some gluten in the chicken. The marinades go into the meat too. I guess we all find some things out the hard way. The most difficult thing for me has been eating out......especially at the holiday parties where everyone is going on and on about how good the food is!
  7. Hi! I just read your post and I know this was suggested, but I wanted to let you know that I had a really hard time myself, with a lot of gluten free items, because they contained soy. I've found that I'm intolerant of any type of soy including soy lecithin. You have to be careful with cookies that contain soy flour and salad dressings that contain soy vegetable oil (there are many on the market with canola oil which was fine for me). Within a few days of cutting out the soy, the stomach pains were gone. Good luck......the food diary is a great way to narrow it down.
  8. Just wanted to share my recent experience too......I have celiac disease that was diagnosed with blood work and biopsies. My son who's six, was diagnosed with lactose intolerance with the breath test in August. He's also soy intolerant which we figured out when we took him off dairy. I am now suspecting celiac or gluten intolerance with him, because of continued diarrhea, lack of weight gain, poor appetite, rashes. All the tests came back negative, but I'm going to cut out gluten. Today is the first day of the new diet.......I'm hopeful that we'll see results soon if the gluten is what's giving him the problems. I'm gluten, soy and dairy free for 6 months now, and feeling great. I think as a mom we have to listen to our own gut feelings sometimes and do what we think will help our children, despite the medical advice we get.
  9. I am from the northeast, but visit relatives in Sarasota at least 3 times a year (would love to move there). I was recently diagnosed with celiac disease and thought I'd have so much trouble finding places to eat while visiting the Sarasota area. I was so wrong! Thank you for posting the info about the support group in the area. Now, I'm really looking forward to my next trip! It seems like there's so much more in Florida than in the community I'm in. Thanks!!!!!!!!
  10. Confused

    My son was diagnosed as lactose intolerant in September and we are now waiting for the biopsy because the doctors suspect celiac (I was diagnosed in June with celiac and I'm also lactose intolerant and soy intolerant). After taking my son off dairy, we gave him soy and he developed violent diarrhea from it. Maybe it's the soymilk for your daughter? We switched my son to enriched rice milk. Good luck!
  11. I also had low Vitamin D levels and positive blood work (my numbers were just slightly out of range). I then had the endoscopy which showed some damage to the villi in the small intestine. I was only diagnosed in June, and have strictly adhered to the diet. I have now determined that I cannot have soy either (I also steer clear of dairy). Since I have cut these out in the past two weeks I have felt a tremendous improvement. Keep eating the gluten till after the test, but once it's done cut it out and see how you feel. You should start to feel better within a few days. Some symptoms take a little longer to clear up, but you will notice the difference.
  12. Thank you for sharing. My son's gastroenterologist is suggesting both to be done, because of his severe diarrhea. He's also grown an inch since the beginning of August , but lost two pounds in weight. She said she wanted to rule out colitis, IBD, IBS, crohns. I do think that there are risks to these procedures and my husband and I are still discussing and researching as much as possible. We are just so concerned that he is now choosing not to go to the park to play with his friends, but he wants to stay at home and sit on the couch. He has never refused playing with his friends before and we are getting very, very concerned. Since I have been gluten free, I really do not miss any foods I used to have, not even pizza. I felt so terrible after eating those items that I could never think of even cheating once. We had friends over last night and they couldn't believe how tasty the meal was from the appetizers to the dessert. I don't know what they were expecting, but most people react by saying "Oh no, what is there to eat then if you're gluten free?" Gluten free really gives great options and I know that I will not need a "medical diagnosis of celiac" to ultimately remove it from my son's diet. We are concerned however of missing something else that may be going on. Thanks again for the all the support and information while we're trying to make these decisions and help my son feel better.
  13. Thank you for all these great posts! All this great information gave me a lot to talk about with my son's pediatrician and the specialist today. They answered my questions and gave me good reasons for making sure that we get to the answers for why he's having these problems. The specialist has two children with celiac, and she was very sympathetic to my fears. I see my son, without energy to play, bouts of diarrhea and stomach pain and I just want to help him. My fears will be there, but I cannot take the risk that without considering all possibilities of the causes, we miss something and the symptoms continue. I also called a friend whose son was just diagnosed with Crohn's. Our sons were in preschool together and I haven't seen her in months, but she spoke to me at length and even called again later in the afternoon. What I realized today and what many of you mentioned is that this is not an easy process. The additives in the foods that are pushed by these companies are unbelievable. Being a celiac myself, I it was difficult at first to adjust, but I do agree that the food choices are there and taste great. Just a bit more effort to cook those meals daily! I do hope that people become more aware and more understanding of food allergies and intolerances. I'm so happy that I joined this forum. It really helped me today and whatever we decide I just know that I will keep pushing until the answer is found. We love our children and are their best advocates!
  14. I'm new to this forum. I was diagnosed with celiac disease 4 months ago...both my blood tests and biopsy were positive. I have suffered for years not knowing what it was, and I'm finally feeling better. With my diagnosis I have so much more knowledge that I'm now having a hard time figuring out what to do for my son. He is six and has always had "stomach" problems. Colic as an infant, constipation, diarrhea, vomiting etc. Last January, he began telling me his stomach was hurting him. He's not a complainer and so I took him to the pediatrician. She told me after running some blood tests that he was fine and was probably stressed! I couldn't believe that my then 5 year old was stressed, but didn't know what to do (I had my own doctor issues going on at the same time). So when I was finally diagnosed with celiac, I knew I had to pursue it with him. I took him to a top pediatric gastroenterologist in the area and she gave him the lactose breath test and he is lactose intolerant. We then switched items to soy and now have also determined that he reacts to soy. I keep telling the doctor that I think he may have celiac, but she says that his blood work is negative. He is still having diarrhea and is sooooo tired, but her next suggestion is an endoscopy/colonoscopy. She said that I shouldn't keep eliminating food from his diet and that we need to rule things out with these medical procedures. I think I should just try taking out the gluten. I've read some posts and it seems like many have had similar experiences with doctors. I'm just wondering if there is any advantage to the "medical diagnosis" or should I try the gluten elimination on my own. I feel like my son is just so young to be going through this. Did anyone test their child at this age? or did you use an elimination diet? Thanks in advance for any help!
  15. I was diagnosed with celiac disease and have been on a gluten free diet for a little over three months. At first I did a lot better on the diet and was feeling great, then I started having the same kind of stomach pains. I posted last week, and got some great suggestions, and on Monday cut out soy from my diet (I realized that many of the prepared items I was eating contained some sort of soy). The pain improved in a day and this morning I feel great! Always check things out medically, but you may want to think about other food intolerances.
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