Celiac Resource Guide
Helping to Navigate Life's Detour

Introduction

When my husband and I first learned that he had celiac disease and needed to be on a gluten-free diet, we felt completely overwhelmed, uneducated, and depressed. There was a sense of loss when we realized all of the things he would no longer be able to eat and the changes in our lives that needed to occur. Fast food television commercials, billboard signs along the road, and weekly grocery store advertisements were painful reminders of our new reality. It also became apparent that our special Friday evening ―date night, which seemed to focus in part on a wonderful restaurant meal or dinner at a friends home, seemed impossible. My husband and I realized we just wanted to feel ―normal again, but we were unsure of what ―normal now meant. We didnt know where to start in order to achieve the lifestyle change we knew we needed to make. Our doctor had told us that a new eating plan was needed in order for my husband, Roy, to be healthy, but we left his office with no real guidance. Because I am the cook for our family, I knew the responsibility of creating gluten-free meals was mine. I didnt know where to start, though. We live in a small community which provided no active celiac disease support group from which I could seek advice. I couldnt find a trained dietician or nutritionist who was familiar with this diet. I couldnt even find any friends or family members who seemed to know what ―gluten-free truly meant. Another feeling of helplessness surrounded me. Finally, I reminded myself that a world of knowledge was available to me, because, even in my small community, I have the availability of the Internet and the local library system. That, then, is where I decided to explore both celiac disease and gluten-free diets in order to acquire the information I desperately needed. I am not a doctor, and I am not a dietician or nutritionist; I am a wife who cares deeply about her husband and his health. That is where my dedication to this process began. I started by reading numerous online articles as well as informational books and cookbooks, and they helped me better understand celiac disease and the new gluten-free meals I would be making. I also learned that my task was not just the food changes I needed to make, but also the changes that needed to be made in order to safely prepare his food. My kitchen counters, appliances, utensils, cutting boards, and so forth were an integral part of creating ―safe foods for Roy.

After many conversations, my husband and I decided that even though we realized the task was inevitable, we did not want to overwhelm ourselves by immediately throwing away all of our food and kitchen supplies as suggested by many experts. While this might not be the decision that would be right for you, it seemed to be the best for us. Taking our time over the course of a month seemed to make this lifestyle change more tolerable for us. Slowly, I donated our cereals, pancake mixes, cake mixes, unopened bags of flour and other miscellaneous food items to the local food pantry. The first few weeks, I carefully completed our food menus and purchased predominately fruits, vegetables, and meats. Those were the items I confidently knew would fit into his gluten-free diet. Our eating habits soon changed considerably. Once I decided to expand the shopping list in order to vary our menus, doing the weekly grocery shopping meant going to three different stores and spending several hours reading labels. I even traveled many miles to a larger city to find a particular kind of bread I heard was tasty. I felt I was making good progress. Dont get me wrong; it wasnt always easy for me. I was learning, though, to create some variety in our menus by trying new recipes and finding new products. I finally made my next leap and purchased a new toaster, bread maker, baking pans, cutting boards, utensils, and so forth that were needed to ensure there was no cross contamination in my husbands food. It wasnt long after that that I started relaxing and realizing that this lifestyle change was getting easier. You are probably wondering what it was that gave me this new feeling that ―life seemed to be getting ―easier.  Was it the slow but steady process my husband and I chose as we traveled together through the sometimes confusing journey we needed to make? Was it our new found education in this fascinating and complicated disease? Was it that we finally accepted the new lifestyle we knew he needed? Was it the fact that this journey actually introduced us to a few other people who share Roys disease and need for a gluten-free diet? My guess is that all of the above helped us to realize that the changes we needed to make were not as monumental as we once thought.

We both missed going out to dinner, though; so we agreed it was time to make our next leap. We decided we should start by going to some familiar restaurants, but even then, we had some fears. How could we read menu items and decide if the ingredients were gluten-free? How could we make sure that foods were prepared in a ―safe environment? Could we ask chefs how they prepared their meals and what ingredients they used? Even if we knew a particular sauce was appropriate, the restaurant might use a different brand one with gluten. Could we ask the wait staff and chefs all of those questions? We finally felt courageous (yes, I use the word courageous because that is how we felt), and ventured into the restaurant scene with our list of questions. We were surprised, but I am not sure why, that most of the chefs we spoke to were unaware of which ingredients contained gluten. There were times when we just got so tired of asking people, ―What is in that? or ―Could we see the label? but we kept going. After several attempts, we learned to be better at asking questions and educating the chefs (if necessary) as to food allergies and my husbands gluten-free needs. We have found the majority of wait staffs to be very helpful in trying to ensure a ―safe meal. We even found chefs who asked us to educate them so they could learn how to incorporate gluten-free entrees on their menus. The more we relaxed and spoke about celiac disease and our gluten-free lifestyle, the more we realized we were not alone as we once felt we were. Some restaurants in our community have even added some gluten-free entrees to their menus. Roy and I both learned that many people are interested in helping to create recipes for people with dietary needs like Roy; they just need to be educated. I know my husband and I will continue to make mistakes in this journey to assure better health for him. Mistakes are part of the learning process. It is getting easier with each day and with every month that passes. I now have a special cabinet that is designated for any of my non-gluten-free food products. When I prepare special meals for guests, I make sure to use a designated counter space for the preparation of Roys foods so as to separate them from the gluten-free items.  Kitchen utensils are also kept separated to assure no contamination. I do my best to bake everything myself, and I am enjoying trying new recipes weekly. There are days when I am stunned that I can make homemade pizza dough, a pie crust, or egg rolls. Every month, I try to challenge myself by making a homemade potato salad, hollandaise sauce, spice cake, applesauce or strawberry cheesecake. Although my recipes might not always be as wonderful as I would like, Roy is willing to try everything . . . with a smile . . . and with great appreciation.

I still remember how overwhelmed, uneducated, and depressed I felt when I first heard Roy had celiac disease and needed to be on a gluten-free diet. I was scared and wondered why this happened to ―us.  Now, I feel differently. I actually feel blessed. This journey Roy and I are taking has blessed me with a new passion in life. I have had the opportunity to start a celiac support group in my area, and I have co-hosted Celiac and Food Allergy Food Expos where families can meet others who share the same challenges. My goal now is to reach out past my small community to provide a beginning for you as you explore a new eating lifestyle. I hope this book of products, websites and the knowledge that I found helpful will give you a starting point. I am confident that you, too, can successfully take your own journey. It may require an adjustment period. You may have moments of ups and downs. You may even make mistakes. I am confident, though, that you, too, can travel the journey and find the new ―normal in your life.