My "Nearly Normal" Gluten-Free Life

Celiac.com 06/10/2021 - When I walked out of the doctor’s office in West Virginia in 1999 with my diagnosis in hand, I felt a confusing mixture of relief at finally knowing what in the world was wrong with me and dismay at learning there was nothing left that I could eat!  Celiac disease.  I had never heard of it, yet all the tests showed that I definitely had this autoimmune disorder which prevented me from ever again eating wheat, barley or rye.  

I had spent nearly 10 years suffering through untold and embarrassing doctors’ tests and misdiagnoses as well as riding a roller coaster of nasty gastrointestinal symptoms.  Bouncing between specialists at major hospitals got me nowhere for those many years, as they had no idea what was the cause of my ailments.  Finally, through luck or fate, I happened upon a doctor in Huntington, West Virginia who pieced together my symptoms correctly.  The good news was that I at last knew something could be done about my symptoms; the bad news was actually trying to do it!  Having to transition immediately from my steady diet of pizza, pasta, and bagels to rice, beans and bananas proved necessary but incredibly difficult, especially since there were virtually no palatable gluten-free recipes, ready-made foods or mixes.  As with most things, what seemed at the time like an ending was actually a beginning —it was just a little hard to see at the time.

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Even as a little girl, I had loved baking!  My EasyBake Oven was broken-in early, as my mother patiently let me experiment at a very young age. When I was 16, I went to Malaysia as a foreign exchange student and saw unspeakable things that caused me to become a life-long vegetarian.  I could eat almost nothing my host family ate, so I survived primarily on bread and things I could make for myself.  I was determined to persevere in this situation where I was the unwelcome minority.  It became a matter of physical as well as emotional survival.  It was an experience that brought unexpected rewards and helped me to know the value of determination and problem solving—traits I would certainly need later to handle living with celiac disease.  

In college, the mainstays of my diet were pastas and breads; I also often baked for friends who loved being treated to homemade cookies, cakes, muffins and brownies.  Baking was even an outlet for my creativity during law school and a great stress-reliever too!  I ultimately baked so much that I ended up selling my excess treats to the law school café!

Creating recipes in the kitchen has always been part of who I am—to make and share things that others enjoy is one of my greatest pleasures.  But then I woke up one day as an undergraduate and was sick.  I was never the same again.  It was like the final drop had dripped into a sink full of water and from then on, the sink would overflow with even the smallest addition.  I couldn’t go out on dinner dates, go out to eat with friends, enjoy Thanksgiving dinner with family, participate in a birthday party, or share any other social activity that involved food in any way (doesn’t everything?!) without getting sick.  It took almost ten years to find out that the culprit was the main ingredient in the things I most loved to eat and make! 

I was in the midst of planning my wedding when the diagnosis came; just about the only things I could eat at the reception were fruit, some steamed vegetables and the (proverbial) icing on the cake.  All my dreams of wowing my new husband with great cooking and baking were sabotaged as I began to experiment in the restrictive world of gluten-free cooking.  Recipes from special cookbooks called for ingredients that were next to impossible to find and yielded results that were mostly inedible.  My husband and I both worked long hours—he as an Assistant United States Attorney and I as an Assistant State Prosecutor—but there was no fast food I could eat, and even regular restaurant menus were mine fields of hidden gluten.  Trying to bake for holidays was one disaster after another.  My husband began to ask, “Is this gluten-free, honey?” and when the answer was yes, he would politely decline. 

All I wanted was for my life to be “normal” again.  Several things happened at about the same time which gave me direction and which have made all the difference in my life and, I hope, in the lives of many others!  When I was diagnosed, my mother made it her mission to find recipes for things I could still enjoy eating and she created a binder of these recipes that we both began to expand.  We started a collection of recipes from everyone from personal friends to people we met at the health food store.  I found it a challenge to try recipes and to improve upon them by modifying them in my own ways. 

About a year and a half after the diagnosis, we moved to Baltimore and I discovered I was pregnant.  Now, added to my new job in a new place with new doctors was the very serious challenge of maintaining proper nutrition for pregnancy and breast feeding.  This caused me to shift all my efforts into high gear. I wanted to revolutionize gluten-free cooking into something even non-celiacs would enjoy.

Several years of experimenting with various grains and flours culminated in my creation of a mixture that could successfully and safely replace all purpose wheat flour.  The primitive binder of recipes we had begun blossomed into lots of delicious concoctions.  As others (celiac and non-celiac alike) repeatedly asked for recipes and doggie bags, I realized how important it was to share my hard work and successes with others trying to live normally without wheat and gluten.  I could create fabulous things to eat, teach others what I had learned about our disease and how to manage it, and meet lots of new people along the way!  

I’ve been able to accomplish all these things by sharing my cookbook/guidebook called Nearly Normal Cooking for Gluten-Free Eating and by consulting with other celiacs and those with food allergies.  I have met some amazing people along the way and helped them meet our challenge head-on and overcome it in fun and creative ways.  

So, there really is a higher purpose for my diagnosis.  I took a mighty circuitous route, but only because I have celiac disease am I now in a place where I can help others and do the things that I love best at the same time.  It has been loads of work, but I persevere knowing that I’m cooking not only for me and my family, but for millions of others who can now live a healthy, gluten-free and truly “nearly normal” life!