In 2005 I was hunting for a recipe on the Today Show web site and saw a link to Celiac Disease (CD). As I was diagnosed as an infant with CD that caught my interest. Three years later with lots more links and experiences, there’s much more information for me and lots of other people.
Here’s some of what I learned in the beginning:
From June 28 to 30, 2004, The National Institute of Health convened a Consensus Conference to look at the prevalence of Celiac Disease in the United States. Having some previous experience in health related Government activities. I was in awe at the list of people who came together for the Consensus Conference. Clearly, this was a serious undertaking. Click here to go to the NIH Awareness Campaign
The NIH was interested in knowing:
- How is celiac disease diagnosed?
- How prevalent is celiac disease?
- What are the manifestations and long-term consequences of celiac disease?
- Who should be tested for celiac disease?
- How is celiac disease managed?
- What are recommendations for future research on celiac disease and related conditions?
There was one recommendation.
To educate physicians, dietitians, nurses, and the public about celiac disease by a trans-NIH initiative, to be led by the NIDDK*, in association with the Centers for Disease Control and Prevention. The first CD Awareness Campaign newsletter came out in the Fall of 2005.
*The National Digestive Diseases Information Clearinghouse (NDDIC) was given responsibility for developing the Celiac Disease Awareness Campaign. NDDIC is an information dissemination service of the NIDDK. The NDDIC was established in 1980 to increase knowledge and understanding about digestive diseases among people with these conditions and their families, health care professionals, and the general public. To carry out this mission, NDDIC works closely with a coordinating panel of representatives from Federal agencies, voluntary organizations on the national level, and professional groups to identify and respond to informational needs about digestive diseases.
I can tell that the awareness campaign is working. My friends send me articles, recipes from the news, or they ask me if I’ve seen this or that book, tv show or news item. Recently, a classmate of mine was diagnosed with Celiac Disease. She tested positive for CD and was clearly not prepared for the diagnosis. In fact, I don’t know that she was informed that she was being tested for CD. In addition to being told she tested postivie for CD, she was also told that she is a-symptomatic. That means she has “no symptoms.” I don’t know what her Dr. told her, but in my conversations with her it certainly didn’t sound complete. But at least she knows.
Remember, as of this date (July 14th, 2008) 95% of people with CD are undiagnosed.