Sometimes even today, I feel alone in my gluten-free lifestyle. I was diagnosed with Celiac Disease in December 2008, and at that time I was the only one in my family and of my friends who had been diagnosed. Having just moved from San Francisco to Austin at the time of my diagnosis, my mom was very supportive of changing our eating habits and learning how to live a gluten-free lifestyle. My initial reaction to the diagnosis was pretty dramatic. I basically threw a tantrum (pretty embarrassing at 38), as I was no longer going to be able to eat pasta, French bread, cookies, cake, sandwiches and many other things I loved.
I felt totally alone, as though my culinary heritage was being ripped from hands, leaving me to no longer enjoy eating. I would no longer be able to enjoy the dishes I grew up on. No longer would I traverse the halls of Vince’s Spaghetti ever again. I’d been eating there since I was 3 years old, it was a family tradition! My mom went to high school with the owners, how could I just give up the beef barley soup, the cheese bread, and last but not least the mostaccioli? Then the immediate memories of extreme physical pain for months on end preceding my move to Austin came flooding back. I was working, but outside of that I was relegated to my bed a fair amount of time, as my body was in such excruciating pain, I could hardly function. Relief from that pain was worth learning how to eat differently.
My next question was where to begin? My doctor explained to me that gluten was in wheat, rye and barley, but she didn’t tell me how pervasive an ingredient gluten can be. So with some research done on my part, I armed myself with a list of ingredients I could no longer ingest or use. You see aside from certain foods containing gluten, gluten is also commonly used in personal care items such as cosmetics, shampoos, conditioners, body soaps and more. Heading to Whole Foods here in Austin, I set out to restock my kitchen and bathroom, as I knew they provided their customers with the best products possible. Since my mom was living with me, she decided to come with me that day to be supportive, but she also thought it might behoove her to start maintaining a gluten-free lifestyle as well, as she too had noticed issues with eating breads, pasta and dairy.
The first year was a process of learning step-by-step how to prepare meals and bake with new flours. I had a culinary background, so I thought I had this licked. Not so much! Living a gluten-free lifestyle is a learning process and there wasn’t an all encompassing list of foods I could and couldn’t have. Baking? What in gods name was I going to do? Baking is such a precise science, and now I had to do it gluten-free. How was I ever going to replicate my recipes, getting the same results? Gluten was in everything I was eating. I think it was two years in when I realized regular sour cream contained gluten. I’m now a diligent reader of food labels for sure!
Where it got tough for me was with my family and friends. Early on in my diagnosis my mom, who was still not officially diagnosed, was supportive, but later tired of eating gluten-free at times and didn’t always want to cook. I was working a hectic schedule at the time and would give in to her “lets go out to dinner or pick something up,” which usually meant a run through a fast food joint or eating out at a local restaurant. Once you get into that habit, it can be cyclical and tough to break. I was just as guilty. There were days I would come home and say I absolutely don’t want to cook. I tried to make the best choices I could at the time, but cross contamination was clearly an issue, and man-o-man did I pay the price for going off course. Initially I didn’t realize the damage I was causing my body until my doctor told me every time I had an exposure to gluten, it would take 3–6 months to get gluten out of my system. Some of my friends understood, while others just though I was trying the latest diet trend in an attempt to lose weight. I had a friend be critical when I was being retested last month, telling me I wasn’t being genuine. Really? I’ve always been upfront personally and here on my blog about my struggles. Your really going to judge me when I was being retested and following my doctors orders?
December of 2011 my mom and I moved my grandmother here to Austin, TX. My grandmother was 93 and was not in the best of shape, but she was in our home under our care. We were happy to be in a place to take care of my grandmother in her last days. My grandmother passed on January 6th earlier this year. How does this relate to living and maintaining a gluten-free lifestyle? The last six months my grandmother was alive and hospicing in my home had to have been one of the most difficult times for me personally and for my family. I was seeing a therapist to deal with the loss, but I was also wanting nothing but comfort foods, and ones that weren’t gluten-free.
A few months later, my brother had also moved home at this same time (wow we had a full house + 3 dogs – who were eating gluten-free). My brother had also been diagnosed with Celiac Disease in 2010. He was however, in no way maintaining a gluten-free lifestyle. He’d offered to do the majority of the cooking for the household at the time, as his schedule allowed for it. He tried to be considerate of my needing to eat gluten-free, yet he wasn’t diligent in checking ingredients. You see he had just moved to Austin by way of South Korea. Korean dishes use copious amounts of gluten in their sauces, kimchi and other Korean food products and he wanted to show off his international culinary talents.
My body started hurting, my emotions were all over the place, I couldn’t concentrate at work, I was losing track of commitments I made. Initially I thought it was due to the stress of my grandmother hospicing in my home, watching her wither away, and it did to some extent. But I was having similar issues with my body before going gluten-free and the only answer was I had start making my own meals again. So I had a conversation with my mom and brother and told them I had to maintain a gluten-free lifestyle, no exceptions! I began cooking for myself again and within a few weeks I was feeling better. Recently I got retested for Celiac Disease and had to eat gluten for a short period of time. I was not pleased about it initially, but don’t get me wrong I had a laundry list of things I was like “wow I can have friend chicken and pizza from my favorite spot.” I might have enjoyed it in the moment, but I didn’t 15 minutes later, or three weeks later. Luckily my doctor was able to diagnose other issues I was having in addition to Celiac Disease.
I still struggle with maintaining a gluten-free lifestyle some days in that I don’t want to be different than you. I want to be able to go into a restaurant and order anything off the menu and not worry if the dish is actually gluten-free. Does the restaurant understand what it really means to maintain a gluten-free kitchen? I want to order the high gluten spaghetti with meatballs and the chocolate molten cake. However, not only is this not a reality for me, it’s not healthy for me. The physical repercussions are long lasting and not worth the temporary gratification of satiating my palette. I do eat healthier today than I had prior to my diagnosis. I don’t eat a lot of processed foods, and if I’m jonesing for something sweet, I keep gluten-free treats and fresh fruit on hand here at home and at my office. Being prepared, planning out your weekly meals, and having easy to make dishes at your finger tips, as well as keeping your pantry and refrigerator stocked is key to the lifestyle.
I’m so blessed to be part of a food community here in Austin that understands Celiac Disease is not a trend or fad, that it is an auto immune disease that can lead to some serious long-term repercussions. Chef’s like Shawn Cirkiel of Olive & June and Parkside have held special dinners catering to the gluten-free community. Recently James Beard Award nominee Chef Rene Ortiz made tamari available to diners at his new restaurant Sway. Chef Paul Qui can whip up a killer gluten-free dinner that will blow your mind time and time again! Chef Ned Elliott of Foreign & Domestic makes delicious gluten-free dishes using local and seasonal ingredients which are regular staples on his menu. Other cities are following note, so traveling and dining across the country is getting easier. Special shout out to Craigie on Main in Cambridge, MA. The menu instructs you to tell your server what food allergies you have so they can precisely prepare your food. That means no cross contamination, no allergic reactions!
The gluten-free community is just so supportive. Well-know cookbook authors such as Karen Morgan of Blackbird Bakery, Laura B. Russell of The Gluten-Free Asian Kitchen, Amy Green of Simply Sugar & Gluten-Free and so many more, to many to list here, offer up well tested recipes for those with Celiac Disease or who are gluten intolerant. Make sure to read blogs, as there are some great gluten-free bloggers out there such as A Girl Defloured, Simply Gluten-Free, With Style & Grace, and The Celiac Diva, just to name a few. Gluten-free magazines about your local book stores and grocers, with recipes and tips to help you navigate your gluten-free lifestyle.
There are support groups such as the Gluten Intolerance Group of Cental and South Texas here in Austin, as well as others across the country. The National Foundation for Celiac Awareness and Celiac.org are excellent resources, providing information, education and recipes. Food companies like Schar and Attune Foods are working to make gluten-free products healthier and better tasting. Attend one of the Gluten & Allergen-Free Expo events which travels across the country, giving you access to new products, resources and the ability to meet others with Celiac Disease. Nourished – A Food Bloggers Conference is being held this September in Dallas, sign-up to attend, introduce yourself to speakers that resonate with you.
Grocers such as Whole Foods carry some of the highest quality gluten-free products on the market due to their high quality standards. Don’t have a Whole Foods near you, check out the Natural Grocer, Sprouts/Henry’s, and other grocers, as many carry brand name gluten-free products from Schar, Attune Foods, Pamela’s, Bob’s Red Mill, and Glutino/Gluten-Free Pantry. Want to eat out but don’t want to scour multiple restaurant websites just to find out they don’t serve gluten-free dishes? Check out the website/mobile app Locate Specialty Diet to help you navigate dining out with confidence.
Talk about the struggles you’re having maintaining a gluten-free lifestyle. People are here to help you even if you don’t have a support system in place. You also have to stand strong and take care of yourself, have personal responsibility for what your putting into your body. My house and kitchen are sacred ground and gluten-free once again! My mom and my brother understand my lifestyle and I’m doing all of my own cooking again. It is a lifestyle, not a diet you can try on just to see how it fits.
Sometimes life gets the best of us and we don’t always handle things the way we should. But just like with any challenge, we are human. Get back up, dust yourself off and stick to maintaining a gluten-free lifestyle. I’m not a physician, so I am only speaking from my experience. You will feel so much better I promise!
Thank you to the National Foundation for Celiac Awareness for asking me to take part in this campaign. I am looking forward to reading everyone’s stories as I am sure they’ll be full of inspiration, hope and strength!