May is a very special month for those with celiac disease and gluten-intolerance.
This is a time for both individuals and organizations to unite in a concentrated effort to spread knowledge and access
to educational tools regarding a still misunderstood illness. And you can (actually) help.
Why Is Awareness Important?
Simply put, awareness is the first step toward building understanding. With understanding comes better funding for research, social acceptance and expanded resources for those with celiac or gluten-intolerance. Not only can the celiac community be better served, but those unknowingly afflicted may be discover the knowledge and resources fix for what ails them. 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.
Who Are We Trying To Reach?
Well, everyone (duh).
That said, there are some specific demographics for whom a broader understanding of celiac disease is doubly important. This includes medical professionals, the food & beverage industry, and influential health agencies.
Did you know that even today – 63 years after celiac disease was first recognized – many physicians prove deficient in their ability to diagnose it? More than a few medical professionals need encouragement to proactively educate themselves about the symptoms, prevalence, and means of effective diagnosis.
The same can be said of those working in the food and beverage industry. For those of you with even a mild intolerance to gluten, we’re sure you’re aware of the multitude of frustrations associated with dining out. 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 due in part to a lack of health regulations on this issue, but 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 – not what some need simply to function on a daily basis.
And, of course, on a larger scale we hope to reach the government entities and authorities with the power to affect standards for preventative education, proper inspection, and clear food labeling.
Where To Start
Are you still with us? You’re a trooper. So, like any good grassroots effort, spreading awareness starts with you, the individual. Be prepared to educate.
Many (if not most) in the population at large do not possess a basic knowledge of celiac, making you the official ambassador to anyone you speak with. With this in mind, it’s always helpful to be able to call on some key facts that illustrate both the impact and the prevalence of celiac disease. Here are
some of the easy-to-digest “highlights” (pun intended):
- An estimated 1 in 133 Americans has celiac disease – and still more experience some level of gluten intolerance.
- Diagnosis is still difficult and many physicians are still unable to recognize the varied symptoms.
- 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 pain, 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.
Sound serious? That’s because it is.
Which brings us to our next point: once you know, what can you actually do?
For a more hands-on approach to spreading the word, the Celiac Sprue Association was kind enough to compile a handy informational pamphlet that outlines some of the ways you can involve yourself directly in raising awareness.
A few of the pretty wonderful ideas include:
- Building a display in your local hospital or pharmacy that provides useful information about the “who’s, what’s and why’s” of celiac disease.
- Contacting your local supermarket to ask about circulating information and talking to customers.
- Approaching the media in your community. Suggest to the local newspaper, TV and radio stations that they feature a story about celiac, citing the severity and topical nature of the issue. We found a helpful letter-writing template right here!
For a more in-depth look at inspiration like this, take a gander at these Awareness Ideas.
Furthermore, if you suspect someone you know may be suffering from an undiagnosed case of gluten-intolerance or celiac disease, donÕt hesitate to
equip them with the proper materials to educate themselves about symptoms and means of diagnosis. Some great resources, including a symptom checklist, can be found right here!
Good luck, intrepid Ambassadors!
Other Useful Links: