Living Gluten Free in a Gluten Filled World

Why I live gluten free

In September 2002 I was diagnosed with celiac disease. I was lucky, relatively speaking, because my diagnosis only took about three months. Most people suffer for seven to nine years before they find a doctor who will test them for celiac. My doctor (who was an oncologist) just started testing me for everything she could to find out why my anemia was getting worse with every other week IV’s of ProCrit, instead of getting better.

The ironic moment on the day I received my diagnosis was while eating a cup of cereal I read the ingredients and remember thinking “it must be a pain to not be able to eat gluten” because I had met someone a few days before who was allergic to gluten. (Which is not celiac, please don’t confuse the two) A few hours later, I heard the words that will change my life. “I think you have something called Celiac Sprue.” I asked her what that meant and she said, “You need to stop eating anything with wheat in it.” “Just for a week or so?” I asked. “For the rest of your life”, she told me. I was stunned. What did that mean? Why was it so bad? I didn’t feel sick, did I? She handed me some faded photocopied pieces of paper with a list of foods. I thought it was foods to avoid, but I was horrified to discover it was a list of foods I could eat. There couldn’t have been more than two dozen items listed there.

As I started to research the disease, the confusion grew. Everyone’s symptoms are different. Some people experience diarrhea, some people have anemia and others get nausea and headaches. Some websites said that gluten was everywhere! “Don’t lick envelopes! The glue is made from wheat!” False! (But I used this excuse for a year to avoid licking envelopes, yuck!) “There is gluten in carmel color! Don’t eat anything with carmel color!” False! Carmel color in the US is made with corn. Often times the advice was more confusing than the truth!

Seven years later, I still have Celiac. (No, you can’t “outgrow” it) It has gotten easier over the past few years. General Mills has made Chex (Rice and Corn) gluten free and released a line of gluten free baking mixes that are available at regular grocery stores! (I’ll be offering my reviews of these in a few weeks). Bakeries are popping up all over the country offering gluten free bread, cookies and cakes. More stores are carrying gluten free foods.

What has changed? First, my attitude. Instead of focusing on what I couldn’t eat, I tried new things I never imagined eating. Quinoa is an amazing grain that is delicious. Polenta; one of my favorite foods that I had never tried before. Polenta fries are fantastic! Creme Brule; a dessert I had never tried that I now crave and am always on the lookout for different flavors. My current favorite flavor is pumpkin. Second, labeling laws changed a few years ago and manufacturers are required to list the seven major allergens on the label. While gluten is not listed, wheat is and this comes in handy. Third, the market for gluten free foods has exploded. More companies are developing gf food, many restaurants are offering gf menus and the number of chefs (professional and home cooks) are posting recipes on the Internet for everything from how to bake the perfect loaf of bread to making an entire Thanksgiving dinner without gluten.

I would be kidding myself if I didn’t tell you there are things I miss. I miss Chocodiles (chocolate covered Twinkies), I miss tempura, I miss being able to open a can of Campbells soup when it is cold outside and eat tomato soup and grilled cheese, I miss the Cheddar Bay biscuts at Red Lobster.  The list can go on and on. And before you email me, I know I could make all of these items at home, gluten free. But I won’t so please don’t send me the recipes.

My biggest struggle has always been I won’t give up eating out. I know people who haven’t eaten in a restaurant for years since their diagnosis. I met a woman a few weeks ago who was diagnosed 18 months ago and hasn’t drank a Coke, because someone told her the carmel color had gluten in it. (I had to swear to her that I had called Coke and verified that it was safe before she would drink it!)

And forget about eating convenience foods! Chances are if it comes in a box, bag or can it probably has gluten in it. Not everything, but most things.

The challenge for me is that I travel for a living. When I attend events I warn people that I will need a gluten free meal. Often that is translated as “oh she can have a salad”. By the way, I DO NOT LIKE SALAD! I didn’t like it before I was diagnosed and I really, really don’t like it now! I also don’t want the piece of chicken you grilled an hour ago. I was at an event a few weeks ago and the waitress brought me the sorriest piece of grilled chicken you have ever seen. I asked her if there was anything on the menu that had been prepared for everyone else that I could eat. She came back from the kitchen and told me I could have almost everything that was served except for the one dish that was breaded. She asked me if I still wanted the chicken… hmm dried out chicken or barbecued ribs? Not a tough choice!

At this point you are probably wondering where I am going with this. Do we really need another gluten free blogger? Maybe, maybe not. I eat gluten free but I am not afraid of the gluten filled world. I eat out, many celiacs don’t. I would rather educate those in the service industry about my disease instead of hiding at home.

I live in a household with a pasta eating Italian, a vegetarian teen and the world’s pickiest eater. My home is not gluten free, it is gluten careful. We have separate containers for margarine, peanut butter, mayo, etc.. I have my own shelves in the pantry for my gf food. I have been known to make 3 different variations of a meal for my family to accommodate everyone’s tastes and choices.  Have I been glutened at home? No. Have I been glutened eating out? Yes. Have I been glutened eating at other’s homes? Yes.

My gluten careful world is not for everyone. I don’t have DH (celiac related rash) nor debilitating effects from eating gluten. I will not eat it on purpose, I went through that stage a few years ago and was miserable. But I refuse to be afraid of food. Instead I want to educate others and live as normally as possible in the meantime. I hope you will follow my journey, if not my example.