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Thursday, April 16, 2009
National Celiac Disease Awareness Month Great Debate
There is often a disagreement about when National Celiac Disease Awareness Month should be observed. Most organizations believe that May is the official National Celiac Disease Awareness Month, while another says April. To throw some more confusion into the mix, October has also been mentioned as the month to observe. If you try Googling “National Celiac Disease Awareness Month”, the first two entries both list two different months. Sigh.

A recent post on the Celiac ListServ really caught my interest. BB of Texas passionately explains how we should join forces and declare one month, May, as National Celiac Disease Awareness Month, instead of multiple organizations choosing a month to observe. I think she has a very interesting and sensible point of view, so here is her posting reprinted with permission.


"Last week we learned of New Hampshire's Governor and the proclamation celebrating May as Awareness Month. Days before, an announcement came out saying that awareness month should be April. The celiac community has put an enormous amount of work into joining forces to support May as celiac awareness month. I was shocked to see a national organization, which is on record supporting May, all of a sudden decide to go it alone. WHY! There are many reasons to support May as Celiac Awareness month - the most important being that the rest of the world also celebrates May as celiac awareness month. Even Canada is changing to May this year. Now we have one group saying April, another October, then the rest of the U.S. celebrating Awareness Month in May. It is no wonder this community can't make things happen and the government won't take us seriously. The NIH encouraged the celiac community to work as a united group. There is a saying "United We Stand - Divided We Fall." Our community needs TEAM PLAYERS. There is too much we need to get done. National organizations must work with the celiac community. Going it alone sends a strong signal that 'community' isn't the priority. The overwhelming majority of celiac organizations, all of the Celiac Research Centers, along with major medical organizations, in the United States recognize May as National Celiac Disease Awareness Month. The May observance in the United States was chosen mainly to coincide with 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

Internationally, the Association of European Coeliac Societies recognizes Celiac Disease in May and celiac events are held throughout the world to raise awareness. (The association represents 26 countries of the EU, some are: Austria, Belgium, Czech Republic, Denmark, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Netherlands, Norway, Portugal, Romania, Russia, Slovenia, Spain, Sweden, Switzerland, and UK). The Canadian Celiac Association moved its celebration to May just this year. Celebrating in conjunction with other nations is important since celiac disease is the most common genetic disorder in the world! Some of the organizations, research centers, and companies supporting the May observance include:

American Celiac Disease Alliance
American College of Gastroenterology
American Dietetic Association
American Gastroenterology Association
Celiac Disease Center at Columbia University
Celiac Disease Foundation
Gluten Intolerance Group
University of Chicago Celiac Disease Program
University of Maryland Center for Celiac Research
Wm. K. Warren Celiac Disease Research Center UC San Diego
123 Glutenfree
Alba Therapeutics Corporation
Alvine Pharmaceuticals
Amazing Grains LLC
Arico Foods
Authentic Foods
Bakery on Main
Bard's Beer
Bob & Ruth's Gluten-Free Dining & Travel Club
Breads from Anna
Case Nutritional Consulting
Cecelia's Marketplace
Ener-G Foods, Inc.
Enjoy Life Brands(tm)
Foods by George
French Meadow Bakery
Gifts of Nature
Glutenfreeda Foods
Gluten Free Kneads
Gluten-Free Living
GlutenFree Oats
GlutenFree Passport(r)
Glutino Foods
Green's Beer
Kinnickinnick Foods
Kimball Genetics
La Tortilla Company
Living Without
Namaste Foods
Nana's Cookie Company
North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN)
Pamela's Products
Prometheus Laboratories, Inc.
San-J International, Inc.
Savory Palate
Stonyfield Farm
Sylvan Border Farms
Tastes Like Real Food
Tricia Thompson, MS, RD

May is the time for us to stand together, to get the recognition for Celiac Disease. There are many folks to help us, IF we work together. Let's see which organizations are really working for US.


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Blogger Anna Wrafter said...

Thank you for a beautiful and supportive article. I have not been diagnosed long. In fact, I lived years unaware of my condition, and was only properly diagnosed after a serious hospitalization. And now am coping with a major lifestyle change. I found the following book very helpful: (you can get it cheaper on Amazon). And now I am amazed to find so many people and articles on the web. Thank you!

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