For those in the know, May is a special month. Why is that? It’s not just because there’s more produce than just root veggies at the farmer’s market (finally) or that we celebrate Lost Sock Memorial Day (May 9th), but because for 31 days in a row our community – nay, the world – turns its attention to a very special issue: Celiac Awareness!
For those with celiac disease or gluten-intolerance, and the people who love them, Celiac Awareness Month offers expanded opportunities – both on the part of formal organizations, and everyday individuals – to unite in an effort to spread knowledge about a still misunderstood autoimmune disease by increasing access to educational tools and resources. And you know what? You can help!
Let’s start with the basics: why is awareness important? Well, obviously, people can’t understand a thing they’ve never heard of. And if you ask anyone with celiac, they’ll tell you that even in an age where pop culture loves to debate (and the media to bash) the “gluten-free lifestyle,” a shocking number of people – you might say a “majority” – have no idea what celiac disease is, or how it differs from intolerance.
Once attention has been called to the estimated 1 in 100 Americans living with celiac, we can begin to foster an understanding about the prevalence, symptoms, long-term effects and dietary struggles. And once we’ve all come to an understanding? Well, what follows is better funding for research, improved responses from individuals and businesses, and expanded resources for those with celiac or gluten-intolerance. Further – and this is important – not only will the celiac community itself be better served, but those unknowingly afflicted with a still difficult-to-diagnose disease (such as every 1 in 10 people who are first-degree relatives of someone with celiac) may discover the knowledge and resources they needed to begin living healthier and happier.
Awareness is not just about treating the individual, but recognizing and addressing the larger issues in environment, food production, diet and health practices that have contributed to a growing number of Americans suffering from the same disease. So, who’s ready to dig into some piping hot activism?
There are two audiences that are key to a successful Celiac Awareness Month: the gluten-free community, and those they are trying to reach. For the former, now is the time to prepare yourselves to educate, to pursue new platforms of communication, and get hands-on in your communities. For the latter, well, let’s go ahead and talk about them:
Who Are We Trying To Reach? Well, pretty much everyone. BUT, there are some specific groups whose awareness is doubly important, as it directly impacts the daily lives of those with celiac or intolerance. For starters, there’s the undiagnosed we mentioned earlier, as well as individuals in the food & beverage industry, medical professionals, and influential health agencies.
Even though it’s been 67 years since celiac disease was first recognized, many physicians still come up short diagnosing it. In fact, according to the Celiac Disease Center at the University of Chicago Medicine, the average length of time it takes for a in the U.S. person actively displaying symptoms of celiac to be diagnosed with the disease is four years. During this time, an individual’s risk for developing long-term side effects – like autoimmune disorders, neurological problems, osteoporosis and even cancer – dramatically increase. Unfortunately, more than a few medical professionals need encouragement to proactively educate themselves about the symptoms, prevalence, and means of effective diagnosis. On that note…
The same goes for the food and beverage industry, and those who work in it. As anyone with even a mild intolerance to gluten can attest, it can be wildly frustrating to dine out casually, nevermind out of necessity while traveling. Professionals in the food and beverage industry very often misunderstand the consequences of serving cross-contaminated or wheat-containing foods to celiac customers. This is in part because, like we’ve been saying, people just don’t know what celiac is. But, this is only made worse by the growing popularity of “gluten-free” fad dieting; not only because this makes it difficult for many to interpret what gluten-free truly means, but because it causes staff to take real intolerances less seriously. It’s easier to brush it off when a few crouton crumbs find their way into a salad because “gluten-free” is what celebs eat to lose weight, and as long as they can’t SEE any bread on the plate, well, now it’s gluten-free, right?
But before we blame the line cooks, dishwashers and waitresses at a restaurant for not knowing about proper food handling for gluten-free patrons, we should ask ourselves why this kind of training doesn’t come standard. That’s why awareness must touch industries as a whole, as well as the government entities and authorities with the power to affect standards for preventative education, proper inspection, and clear food labeling.
So now that we’ve inspired you to get involved (wink, wink), you’re probably wondering where you should start. Like any grassroots effort, spreading awareness starts “small,” with the individual. For the rest of the month (and ideally forever, if you’re feeling up to it) consider yourself an official ambassador to anyone you interact with. That doesn’t necessarily mean confronting people with lectures on the importance of healthy villi (though if they seem open to it, why not) but also simply being visible. That can mean anything from putting up signs and wearing green to handing out pamphlets at the grocery store and arranging a segment on your local news channel. Beyond Celiac compiled a handy list of 60 Things To Do To Raise Celiac Awareness to help jump-start you on the road to grain-free activism.
This month could be a good opportunity for you to revisit your relationship with gluten-free food, too. Are you in a food rut? Are you shopping seasonally for the best value and nutrition? Are you purchasing ready-to-eat foods that are high in fat and preservatives? In support of Celiac Awareness Month, Glutenfreeda products are discounted at stores across the country, giving people a chance to explore some better-for-them options! Stock up on organic, veggie-packed Inspired Wraps, burritos, and more while supplies last.
If you aren’t someone with an encyclopedic knowledge of all things celiac and gluten-intolerant, that’s okay. Everyone can use a refresher and a key fact or two to help them with their elevator pitch. Try some of these easy-to-digest “highlights” to help you illustrate both the impact and the prevalence of celiac disease when you chat someone up:
- Gluten isn’t just bread and pasta. It is in many, many, many products we use every day and it is VERY easy to contaminate anything it comes into contact with. For a comprehensive (and somewhat concerning) list of common gluten-containing products, look here.
- Symptoms of intolerance include bloating, gas, diarrhea, fatigue, itchy rashes, tingling, numbness, pale mouth sores, joint paint, weight loss, delayed growth, malnutrition, discolored teeth and depression.
- Prolonged exposure to gluten in a celiac can lead to a number of other disorders including infertility, reduced bone density, neurological disorders, some cancers, and other autoimmune diseases.
End the conversation by asking if they know what the most common symptoms of celiac disease are. Share this checklist with them, and see if they find anything surprising as they fill out. Who knows who the information can help!
Go forth and activate, friends, and don’t forget to share your stories with us!