FacebookRoughly 2 million people in the United States, or about 1 in every 133 individuals, have celiac disease. Despite the increasing awareness of this condition, more than 80% of those affected remain undiagnosed or have received a misdiagnosis.
Celiac disease can be tricky to diagnose, especially considering it’s been linked to over 100 different symptoms. It doesn’t always present with digestive symptoms Though there is no cure for celiac disease and no way to prevent its development in someone who is genetically predisposed, screening and early detection can make management of the disease easier for those who have it.
The month of May is Celiac Awareness Month and it’s the perfect time to spread knowledge about the disease and to advocate for yourself and others who have it.
What Is Celiac Awareness Month?
Celiac Awareness Month occurs in May every year and it is a time for spreading knowledge about celiac disease and the gluten-free diet. According to Beyond Celiac, the goal is to “[tackle] the stigma and misinformation that surrounds celiac disease and the gluten-free diet.” It’s a time to educate the people in your life about this autoimmune disease, to donate to the cause, or to simply enjoy some tasty gluten-free food with your friends and family.
If you or a loved one have celiac disease, consider joining the iCureCeliac Patient Registry. Created by the Celiac Disease Foundation, iCureCeliac is an online network that gives patients the opportunity to share information about their health to advance celiac disease research. If you want to take a more active role, check out iQualifyCeliac, an online screening tool you can use to find open clinical trials and studies.
Support These Organizations This Month
You don’t have to be a celiac disease patient yourself to be an advocate or to support the mission. Here are three organizations we recommend supporting this Celiac Awareness Month:
1. Celiac Disease Foundation
The Celiac Disease Foundation was founded in 1990 and has become the leading global patient advocacy organization working toward the diagnosis, treatment, and cure of celiac disease. The organization’s mission is to improve the health and well-being of those affected by celiac disease through their strategic investment in research, advocacy, and organization.
You can support the Celiac Disease Foundation by making a donation – there are plenty of ways to give from one-time or recurring gifts to employer matching fits and gifts of stock and securities. If you want to take a more active role, become a Celiac Disease Foundation Policy Advocate.
2. National Celiac Association
The National Celiac Association is a 501(c)3 nonprofit organization dedicated to educating and advocating for individuals with celiac disease as well as those with non-celiac gluten sensitivity and the families and communities affected by these conditions.
If you want to support the National Celiac Association, you can make a monetary donation through their website. You can also become active in the community through local celiac disease support groups.
3. Beyond Celiac
Founded in 2003, Beyond Celiac is a research-driven patient advocacy organization that works to advance research, drive diagnosis, and accelerate the discovery of new treatments and a cure for celiac disease. The Beyond Celiac website is a valuable resource where you can find information about getting diagnosed and living with celiac disease as well as tips for following a gluten-free diet.
To support Beyond Celiac, consider making a direct donation or becoming a fundraiser yourself. You can also participate in research at Go Beyond Celiac or volunteer at an event.
Get Away From It All with a Celiac-Friendly Cruise
There is no cure for celiac disease and the only effective treatment is following a gluten-free diet. Though the availability of gluten-free foods is rising, it can still be difficult to transition onto a gluten-free diet. Many celiac disease patients find it difficult to enjoy eating out or attending food-oriented events because of the risk of gluten exposure.
If you’re ready to get away from it all without the risk of gluten exposure, consider going on a Celiac Cruise. In partnership with Royal Caribbean International and AMAWaterways, Celiac Cruise offers a gluten-free vacation experience to must-see locations like Alaska, the Bahamas, France, and the Greek Isles. Check out their 2024 sailings or learn more at CeliacCruise.com.
Spreading Awareness during Celiac Disease Awareness Month
Celiac Disease Awareness Month is a valuable opportunity to spread knowledge and understanding about celiac disease and the gluten-free diet. With over 2 million people in the United States affected by this autoimmune disease, it's important to advocate for yourself and others and to support organizations like the Celiac Disease Foundation, the National Celiac Association, and Beyond Celiac.
Early detection and management of celiac disease can make a significant difference in the lives of those affected. Let's work together to improve the lives of those with celiac disease and promote greater awareness and understanding of this condition.
