It’s almost unavoidable in today’s media. It’s been covered by every major news outlet, and you’ve probably seen its catchphrase (“gluten-free!”) gracing the fronts of many conventional food labels. Celiac disease, or an inability to process gluten (the protein found in wheat, barley, and rye), has gone from largely unknown to one of the most covered medical subjects globally in just the last few years. Medical specialists previously considered celiac disease a condition that only affected young children and the elderly. But the disease has turned out to be an entire spectrum of related disorders found in people of any age all over the globe.
Today, it’s estimated that 1 in 133 Americans have celiac disease — and most of them don’t even know it yet. Some of them never will! The disease can present in many ways — from nasty digestive issues, to skin rashes, to fatigue and weakness, and can even prevent children from growing and developing properly. Left untreated, celiac can lead to serious problems like nutrient malabsorption, arthritis, and even cancer. This month, we’ve been celebrating Celiac Awareness Month, and to summarize our experiences, here are three Greatists’ takes on living a gluten-free life.
Erin Smith, founder of Gluten-Free Fun:
As a lifelong celiac who went gluten-free at the age of two and a half, it took me almost 20 years to finally accept my celiac disease. Growing up I felt really isolated — I didn’t know anyone else that had celiac disease or ate gluten-free. People would look at me like I had two heads when I explained why I wasn’t eating with them.
Fast forward to my mid-20s when I not only started to accept myself and my disease, but embrace it, too. In the summer of 2006, I became the lead organizer of the NYC Celiac Disease Meetup group. Over the last six years, I have organized more than 100 events and we have grown to more than 1,450 members! Through this group, I finally found my gluten-free peers that had always been missing from my life.
In early 2007, I launched my blog, Gluten-FreeFun, as a way to celebrate: After 25 years as a celiac, I’m no longer embarrassed about eating gluten-free. Through my blog and the Meetup group, I have met so many amazing people in the gluten-free community. I love spending time with other Celiacs talking about how to manage the gluten-free diet in a gluten-filled world. If I can help just one person navigate the gluten-free adventure through my personal life experiences, then I have succeeded.
Having celiac disease no longer makes me self-conscious like it did growing up. Living with celiac disease has helped define who I am as a person and my role as a leader in our gluten-free community. For this, I want to celebrate!
Nicole Mercer, co-founder of Thryve:
From ages 11 to 23, I was in extreme pain every single day. Doctors had no idea what the problem was, or if one even existed. After spending 12 years looking for an answer, in December 2010 I woke up from a colonoscopy and endoscopy to hear I have an extreme gluten intolerance and GERD. No gluten, tomatoes, caffeine, or alcohol ever again. I quickly learned I can’t have dairy or soy either. I was as concerned as you probably are, wondering what I’d eat — but with my boyfriend’s help and support, I made the transition.
I don’t know if I actually have celiac disease, but I treat my condition as if I do. The issue is serious, and it changed my life. I had to learn how to cook real food. I have to plan every day in advance, and always pack my own food on trips. Eating out is no easy task, and I have to pass on treats everyone else enjoys. But I think of this as a gift. My body is “smart” enough to demand only the best, highest-quality foods. And now that I know which foods my body can tolerate, I can finally fuel up and exercise safely. Hello, strength!
When I was diagnosed with GERD, I couldn’t believe it, and some days I still can’t. But one thing has stuck: If I’d had a good food diary when I first started having problems, I wouldn’t have been sick for half of my life. That’s why I began designing an iPhone app that lets you track what you eat and how those foods make you feel. With the support of my boyfriend and dad, and in collaboration and lots of hard work with my co-founder Caleb, Thryve is launching this month, and I cannot wait. What better timing? Too many people think of celiac as a curse, and I’d rather focus on the positives. So through my very real struggles, I bring you humor describing my experience in the form of my recently-launched celiac meme Tumblr, Get Celiac.
Me, Kate Morin, Health Editor and Editorial Manager at Greatist:
A year ago, I took the opportunity to tell you all about my shocking celiac diagnosis and how I (very begrudgingly) dealt with it. I was taken completely off guard. I felt scared, depressed, and lonely. What’s a college student to do without beer and pizza and wings (oh my!)? But in the two years since my diagnosis, I’ve not only grown as a person (hello, real world); I’ve also become a better-informed, more dedicated, and happier celiac.
Working at Greatist for the last year has made my experience living gluten-free even more rewarding. As a two-year gluten-sober survivor (do I get a chip, or something?), and Greatist’s gluten-free guru, I’ve personally learned a lot, But I’ve also had the opportunity to share tips and recipes with Greatists (that’s you!) who might be in the same position. We’ve published 80 Healthy Recipe Substitutions, 27 Gluten-Free Substitutions, 52 Healthy Meals in 12 Minutes or Less, 88 Unexpected Snacks Under 100 Calories — all of which have a wide variety of gluten-free options — and 54 other completely gluten-free recipes. Every time we publish a food-related story, I think about how we can make it helpful to those who eat gluten-free, too. I do it for you because I’m so grateful to those who made adapting to a gluten-free life easier for me. And even if this isn’t the lifestyle you have to lead, I bet you’ll come across a few friends who do live gluten-free, and they’ll be exceptionally grateful when you can deliver a safe gluten-free option at your next dinner party.
What are your tips for living a healthy gluten-free lifestyle? Tell us in the comments below!