Today, the first of May, starts Celiac Disease Awareness Month. Being just over a year diagnosed, I admit to still having a lot to learn about this disease. However, I’ve come so far and found so many wonderful resources about my disease.
Let’s talk about some facts: 1 in 133 people have Celiac Disease in the USA (or about 1% of the population). Approximate 83% of people with Celiac Disease are undiagnosed. It takes on average 6-10 years for a person to be diagnosed from the onset of the disease. 5-22% of patients have a 1st degree relative with the disease. (Facts from the National Foundation for Celiac Awareness). These are amazing facts. They definitely impress upon me how important it for my family to get tested. These facts also show how important it is for all of us to talk about our disease and make sure people are aware. If we could all help just one person get diagnosed think of the impact.
Organizations: There are many organizations dedicated to celiac disease. I’ve listed just a few to start
The Celiac Disease Foundation is raising awareness of Celiac Disease with their Team Gluten Free Week without Wheat, Barley, & Rye. This gluten free challenge raises awareness of celiac disease, helps to raise funds for diagnosis and a cure for celiac disease, and shows support for family and friends with the disease.
National Foundation for Celiac Awareness this is a wonderful organization highlighting issues and topics for the celiac community. They advocate, promote awareness, and , and a great resource for education, information, and
Gluten Intolerance Group celebrates its 40th anniversary with the Atlanta Gluten Free & Allergy Expo.
Conferences: Here’s a list of a few. Celebrate Awareness has a gluten and allergy conference at Disney World in November. Gluten & Allergen Free Expos travel across the country. Gluten Free Living‘s conference just wrapped up in April. Celiac Disease Foundation has their annual conference in June in Pasadena.
Books: I’ll mention just a few new books. I must opine for Dr. Fasano’s new book, Gluten Freedom. It’s a great read with so much information about research on the disease, where science is for discovering a cure and/or a vaccine, and explaining how researchers think how Celiac Disease manifests. Jennifer Esposito’s new book Jennifer’s Way is next on my reading list! Celiac and the Beast, a phoenix blogger, just published a self titled book that throws some humor into the life of a celiac.
Magazines: Many magazines and publications have gotten on the gluten free band wagon. I’m hopeful they aren’t just trying to be trendy but are truly trying to cater to this growing population. I’ve seen many food magazines/groups highlighting gluten free foods in the past couple of weeks, I think gearing up for Celiac Awareness Month. Last week, Food & Wine Magazine had a Gluten Free week highlighting recipes, restaurants, and bloggers. Check out this Food & Wine slide show of gluten free recipes by Silvana Nardone. America’s Test Kitchen recently published a gluten free cookbook: How Can It Be Gluten Free Cookbook. Others focus on gluten free and allergy cooking: Gluten Free Living, Delight Gluten Free Magazine, and Simply Gluten Free are just a few dedicated gluten free magazines that I like to read.
Bloggers: I’m amazed at the many and wonderful gluten free bloggers out there! Each day I find a few more to follow on twitter or add to my RSS feed. Here’s a list of just a few bloggers I read: Gluten Dude, Celiac & the Beast, Gluten is my Bitch, Glutie Foodie, No gluten no problem, Gluten Free on a Shoestring, and the list goes on and on….
Find local resources: DC has the DC metro Celiac Organization. A couple of like minded gluten free fold in DC started The Hour DC-a monthly gluten free happy hour (find them on twitter or facebook). There might even be a Meetup in your area of gluten free compatriots.
Celiac disease might be the ugly sister to the gluten free lifestyle trend but’s its the real deal. I hope that raising awareness about this disease can make it more accepted in society and help advance research to curing it and other autoimmune diseases.