Letter to the Editor highlights need for prompt diagnosis and the NFCA awareness campaign.
Mr. Ned Crabb
The Wall Street Journal
I would like to commend Mr. David Hamilton and the editorial staff of The Wall Street Journal for recognizing the importance of celiac disease and its prevalence in our country (“Gut Check: Belatedly, an Illness Of the Intestines Gets Notice in U.S.,” Page 1, December 9). The article provided an enlightening, informative, and factually accurate report of the history of the disease and the challenges faced in funding celiac research in the U.S.
My personal story bears similarities to those profiled in Mr. Hamilton’s article, and illustrates a point that may have been missed by many readers: in women, celiac disease can lead to grave reproductive problems that, on their own, are capable of destroying a person’s psyche. By the time I discovered I had celiac, I had suffered through the trauma of delivering a full-term stillbirth, multiple miscarriages and the birth of a premature, three pound child. These years were also marked by debilitating physical symptoms and almost unbearable mental and emotional strain.
I had been told by 22 physicians that I “looked fine” -- with some actually suggesting I consult a psychiatrist. Not until I consulted a 23rd physician was I finally diagnosed as having a “rare” autoimmune disease called celiac sprue.
My desire to spare other families from needless heartache and suffering compelled me to drop my career in business and establish the NFCA in 2003. In the short two years that NFCA has existed, we have contributed to the National Institutes of Health’s Consensus Development Committee, provided support to the Food & Drug Administration in their quest to establish regulations for gluten-free food labeling and received an NIH grant to educate the healthcare community about celiac through multi-media strategies. Our website, CeliacAwareness.org, provides patients, loved ones and researchers with current information and support materials to assist in living a healthy gluten-free lifestyle.
And because 97% of celiac sufferers are currently undiagnosed in this country, we will launch the nation’s first comprehensive consumer awareness campaign in 2006 that will educate the public about celiac disease and motivate potential sufferers to begin a dialogue with their doctors. Our campaign will highlight the range of symptoms and other health implications that come with celiac. I applaud Mr. Hamilton for addressing the fact that, while many patients present with complaints of abdominal pain, bloating, and diarrhea, there are also a great number of asymptomatic or “silent” celiacs who are still at risk for tremendous health implications, without ever having a warning sign that they may be sick.
In the article, Mr. Hamilton highlights European celiac patient groups who successfully lobbied for increased research and publicity of the disease, and states that “in the U.S., that process worked in reverse, as the perceived rarity of the condition depressed interest among researchers.” Let me assure you that the National Foundation for Celiac Awareness is working tirelessly to keep the U.S. on the same track as our European colleagues in recognizing and treating this disease, and Mr. Hamilton’s article has helped that cause tremendously.
Founder & Executive Director
National Foundation for Celiac Awareness
124 South Maple Street
Ambler, PA 19002