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Hi, I have been diagnosed with Celiac about 6 years ago. I did the whole change your diet, clean the cupboard, buy new pots, pans, toaster, etc. I have never been reactive to foods. it was an after thought test that lead to my diagnosis. After about two or three years, I fell off my diet. It was tough to keep up the extra expense, cooking two meals for me and my family, feeling rejected and excluded from outings and parties, and I hated every moment of it. So here I am. My ttg levels were retested. Guess what? I still have celiac disease....sigh.... I don't want it. I've been down this road before and I don't like it. My doctor is persistent that I must change permanently. I have diabetes (related to having celiac supposedly) and I am increasing my risk of stomach cancers and lymphomas. I get it. I know what I should do. It doesn't make the process easier. And so, I have to change. Adjust the family budget again. I don't enjoy most "gluten-free" alternatives. Fruit, veggies and meat are expensive and even more so when that's all your allowed to eat. I work three jobs. I don't have a lot of time to cook. Where are my quick and easy meals? I'm a picky eater as is. This is not helping. Sorry to vent. But this is where I am right now. Shedding tears and upset over this. I can't afford to do it and I can't afford to not do it.....
My first blog takes me back 5 years ago when my youngest daughter started her freshman year of high school. She had been diagnosed Celiac for 5 years at this point, by now I was sure my daughter had come to terms with her restrictive diet. She was happy-go-lucky Madeline, ever smiling, always positive, living every day with joy. Little did I suspect that the social acceptance of being a young gluten-free teen was secretly troubling her and it was about to burst forth in a profusion of tears and sudden flight from her classroom. All because of just one cookie! Nobody wants to read the minutiae of a teenager's day, so I will sum up the event. Choir class of 100 students, dozens of cookies left over from an evening event, the class is all offered cookies. A hundred girls each enjoy one delicious cookie while one girl sits among them with nothing. Madeline politely approached the choir teacher and asked if she could get something from the choir store since she couldn't have a cookie, at which the teacher replied, "Madeline it's just one cookie!" [insert gushing tears and dramatic stage right here] Two class periods later, the oldest sister, Claire, enters the choir room. Claire is a gifted singer, little miss detail and unofficial teacher helper…she is also a Celiac. The choir director is concerned about Madeline's meltdown and speaks to Claire asking if her little sister is always so emotional over things as insignificant as "Just One Cookie". Claire's response is spot on. "Sir, you don't understand, its not just one cookie…its one cookie yesterday, one cookie today, one cookie tomorrow, and the day after that and after that and after that…it will never be just one cookie for her!" Four years later at Madeline's graduation party, one of her fellow graduates (also a Celiac) came up and hugged me and said. "Mrs. Wilson I have been looking forward to Madeline's party all week because I knew you would have Gluten-Free cake. This is the only piece of graduation cake I will get to have." Wow! She, too, was longing to fully participate, to have the same experience as everyone else. All I could do was hug her, congratulate her on her graduation, and ask if she would like me to wrap up an extra piece for a rainy day. Over the years I had gone to great lengths to ensure my girls were fully included in sleepovers, cookouts, and pizza parties because sharing food and drink is the most common form of social ritual, an intrinsic part of feeling included. I found that when it comes to a gluten-free lifestyle, its never been about "Just One Cookie".