In 1994 I was diagnosed with celiac disease, which led me to create Celiac.com in 1995. I created this site for a single purpose: To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives. Celiac.com was the first site on the Internet dedicated solely to celiac disease, and since then it has become an invaluable resource to people worldwide who seek information about celiac disease and the gluten-free diet.
In 1998 I created The Gluten-Free Mall, Your Special Diet Superstore! which was also another Internet first—it was the first gluten-free food site to offer a shopping cart-style interface, and the ability for people to order gluten-free products manufactured by many different companies at a single Web site.
I am also co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.
This article originally appeared in the Summer 2002 edition of Celiac.coms Scott-Free newsletter.
Celiac.com 03/29/2006 - I recently reviewed the results of a Celiac.com survey, and was surprised to learn that 37 percent of 472 respondents do not believe that there will ever be a cure for celiac disease, while 32 percent think there will be, and 31 percent are unsure. After reading the question again I realized that it might be loaded—does the gluten-free diet count as a cure? Some people think so. Others think that the diet is a curse, or at best just a treatment. With the vast improvement that has taken place during the last few years in the quality of gluten-free foods I like to think of the diet as really good tasting cure. Of course the diet isnt really a cure, but the proof is in the pudding, and the diet has allowed my body to become healthy again and make me feel as though I am cured, and that is what counts—isnt it?
Like most people, however, I still hold out hope that all the celiac disease research that will be done in the future will yield a cure—one that does not include a special diet. But be careful what you wish for because if you are like me your diet is probably healthier now than it ever was, mostly due to the necessary avoidance of most fast and processed foods. Perhaps the diet is really a blessing in disguise for many of us, and we will actually live longer and healthier lives due to it, in spite of having a "disease." But at the rate they are currently spending money on celiac disease research there will never be a cure—you say? After reading Laura Yicks summary of this years Digestive Disease Week International Conference in San Francisco (pg. 8), which includes a proclamation made by Dr. Alessio Fasano that celiac disease is "by far the most frequent genetic disease of human kind," I have renewed confidence that there will be a lot more money spent on research in the future, and eventually a cure will be found.
More surprises in the survey results came when 6.5 percent of respondents said spelt was safe for a gluten-free diet, while 32.3 percent were unsure. I like to interpret this result as 38.8 percent of respondents were just diagnosed and are on their first visit to Celiac.com—but this is wishful thinking. Unfortunately this result means that we have more work to do (spelt is not safe!). The most surprising response, however, was how many people cheat on their diets—a full 43 percent! Some 13 percent actually cheat 20-40 times per year or more. The main excuses for cheating: 1) People missed a particular item too much to go without it; and 2) Gluten-free foods are not always available or are too expensive. These were the same folks who got the spelt question wrong—the ones who were just diagnosed, right? We have more work to do...
There are just too many great alternatives out there to knowingly eat gluten. After learning so much over the years about food ingredients and preparation I like to think that I could walk into a restaurant called "House of Gluten" and order a gluten-free meal. Educating yourself about how food is prepared and which ingredients are safe or not safe is really the key to enjoying life while on this diet. Remember, the next time you are tempted, say to yourself over and over—this diet is a really good tasting cure—and dont cheat! Oh no...65 percent of respondents dont know that buckwheat is safe, and 58 percent dont know that Quinoa is safe...time for me to get back to work—enjoy Scott-Free!