Friday, January 11, 2008


I recently read some emails on the international celiac listserv that helped me to understand why there seem to be at least two celiac disease awareness months.

Let's start with a message from Beth Hillson, president of the American Celiac Disease Alliance (ACDA), about May being Celiac Disease Awareness Month:
In response to the question about May as Celiac Awareness month -- the overwhelming majority of celiac organizations and all of the Celiac Research Centers in the United States recognize May as National Celiac Disease Awareness Month.

Internationally, the Association of European Coeliac Societies (AECS) recognizes Celiac Disease in May and celiac events are held throughout the world to raise awareness.
(The association represents 26 countries of the EU - including Andorra, Austria, Belgium, Croatia, Czech Republic, Denmark, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Luxembourg, Malta, Netherlands, Norway, Portugal, Romania, Russia, Slovakia, Slovenia, Spain, Sweden, Switzerland, and UK)

The May observance in the United States was chosen to coincide with our international colleagues. It was also done in recognition of the many other medical conditions related to celiac disease that are observed in May. Celiac disease is still relatively unknown and being able to draw connections between these medical conditions and celiac disease helps to elevate its importance and enhance awareness. Some of the other May health observances include:

Digestive Diseases Awareness Month
Digestive Diseases Week
Food Allergy Awareness Month
Food Allergy Week
National Arthritis Month
National Osteoporosis Awareness and Prevention Month
Women's Health Week and Women's Health Check-up day

Organizations, Research Centers, and Companies supporting the May observance:

Celiac Disease Foundation
Gluten Intolerance Group
Westchester Celiac Sprue Support Group
American Celiac Disease Alliance
National Foundation for Celiac Awareness
University of Maryland Center for Celiac Research
University of Chicago Celiac Disease Program
Celiac Disease Center at Columbia University
Wm. K. Warren Celiac Disease Research Center UC San Diego
Bob & Ruth's Gluten-Free Dining & Travel Club
Ener-G Foods, Inc.
Enjoy Life BrandsT
Foods by George
Gluten-Free Living
GlutenFree PassportR
Kimball Genetics
Living Without
Pamela's Products
Prometheus Laboratories, Inc.
Savory Palate, Inc.

Its worth noting that October is Breast Cancer Awareness Month. It is extremely difficult for any condition, to compete for attention at that time. And since recognition and attention are key to raising awareness, May is a better fit.

Congresswoman Nita Lowey (NY) introduced legislation in 2004, 2006, and again, this year (H.Con.Res. 70) which emphasizes the designation of May as National Celiac Disease Awareness Month. That legislation now has 29 cosponsors and more are expected once Congress returns later this month.

I hope this helps clarify why May is supported and endorsed as National Celiac Disease Awareness Month.
Before considering why others consider October to be Celiac Disease Awareness Month, let's pause to recognize Celiac Disease Awareness Day—September 13, the birthday of Samuel Gee, who is widely considered to be the "discoverer" of celiac disease.

As for October being Celiac Disease Awareness Month, that is basically the province of the Celiac Sprue Association (CSA) and the Canadian Celiac Association (CCA)—which is, nevertheless, having its national conference in May!

Of course, here at GFNYC, every day is Celiac Disease Awareness Day—and every month is Celiac Disease Awareness Month!


Anonymous said...

Knowing that October had been celebrated as Celiac Awareness month since 1987 by groups across the US and Canada, it might have been a nice idea if the Alliance had sat down with the CSA and Canadian Associations and discussed the reason they felt a change would be good and come to an agreement with them that would benefit all groups, and perhaps use both months, instead of picking a new month, no matter how good it is, without showing respect for what had been established, or the groups that adhered to it.

David Marc Fischer said...

I don't know the history of this particular dispute, so I actually have no idea as to whether the Alliance did have or attempt to have the type of discussion you describe. I am aware, however, that the CSA and the members of the Alliance have had unresolved disagreements over the years despite efforts to communicate productively.

Anonymous said...

Well, yet again, CSA is left sitting alone. Canada, voted to move its awareness month to May beginning in 2009.

Celiac Disease has a tough enough time getting headlines. And it makes no sense to try and go toe to toe with the big pink machine of Breast Cancer in October.

Whatever the issues between CSA and other celiac groups, aren't really important on this. Common sense, and the world community have gone the way of May.