Founder of Celiac.com and Gluten-Free Mall
By Vic Dolcourt
Scott Adams is the force behind Celiac.com, the comprehensive information site and forum, and The Gluten-Free Mall online product store, both exclusively focused on serving the gluten-free community. They are based in Santa Rosa, CA. Scott has always been on the leading edge of advocacy for the gluten-free community. We asked Scott to take a few minutes out of his busy day to give us his perspective on the state of being gluten-free today and what it was like when he launched his website.
Victor Dolcourt: Scott, what is currently occupying your time and energy?
Scott Adams: Besides the usual work of maintaining our article, forum and e-commerce sites and the servers that they reside on, we just relaunched the Celiac.com web site with an all-new look and feel. We are very proud of the new design, and are still working to make the article site more user-friendly. We are also working on a mobile version of it, which we already have for our forum.
Vic: Celiac.com launched approximately 18 years ago in 1995. What were those times like for someone with celiac disease or gluten sensitivity?
Scott: When I launched Celiac.com, which started out as a personal website on my ISP’s host site, there wasn’t a single site on the Internet dedicated to celiac disease. In fact, the total amount of information on it was around two to three printed pages that I found on a UK site on digestive diseases. Support groups didn’t even have websites! I had just been diagnosed with celiac disease, and a friend of mine who was getting into the Internet suggested that I do a website on the topic; thus, I launched “Scott’s Celiac Page,” which evolved into Celiac.com. For a good while it was the sole source of information on the Internet on this topic. The goal of the site remains unchanged: To help as many people as possible with celiac disease and gluten sensitivity get diagnosed and live a happy, healthy gluten-free life.
The site’s traffic grew very quickly, and so did the time, money and effort I had to put into it in order to keep it going. In 1998 I decided to launch The Gluten-Free Mall to help support the costs associated with running the Celiac.com article site. At that time there wasn’t a cart-based online shopping website dedicated to gluten-free products—there were only small manufacturers that sold their products via a printed catalog, or a few that also put their catalogs online—but you still had to phone in an order. The Gluten-Free Mall allowed customers to order from a large variety of manufacturers at one place with a single, secure order (and no telephone!).
Vic: When you launched the website in 1995, who did you trust to provide factual information about celiac disease?
Scott: As a primary source for much the original information I subscribed to the Celiac Listserv newsgroup [it is still active at http://www.enabling.org/ia/celiac/index.html ], and I regularly corresponded with people like Ron Hoggan, Don Wiss and Donald Kasarda, who were very active on the Listserv. I also lived next to U.C. S.F. Medical Center, so I was able to get copies of published studies.
I didn’t officially consult with anyone at the time regarding the material I added to Celiac.com. There were few doctors at that time who were knowledgeable about celiac disease, and I doubt experts like Dr. Joseph Murray at the Mayo clinic would have been interested in consulting for my start up site. I certainly could not have paid them.
Most people who ended up on my site had their own horror story about how they got there, and their stories typically demonstrated the medical community’s total lack of understanding about celiac disease that was common at that time. Even the doctors who finally did get the diagnosis right often had no idea how to treat it—for example, my doctor could not even explain to me what a gluten-free diet was! Many doctors at that time discouraged their patients from even attempting a gluten-free diet…yes, really, because they thought it was impossible (after all, they couldn’t do it!), and because they didn’t fully understand the devastating health problems gluten could cause in celiac patients.
In 1995, most of the research on the effects of celiac disease hadn’t been done yet, so many doctors didn’t think a gluten-free diet was necessary and did not recommend it. Now, due to a huge amount of research, nearly all doctors recommend a gluten-free diet to treat celiac disease (but not all doctors!).
Today, non-celiac gluten sensitivity replaces celiac disease in terms of the lack of understanding by most doctors and researchers. There have only been a couple of studies done which show that non-celiac gluten sensitivity even exists as something distinct from celiac disease, and most doctors still don’t know anything about it. Celiac.com is trying to change that as well.
Vic: I’m certain you must have gotten plaudits for stepping up to fill the information void. What sort of feedback have you received from the community?
Scott: On the history page of Celiac.com, I posted a number of early emails I received; many people felt that the site changed or even saved their lives. That was my goal, so it is nice to hear that it has helped people.
Vic: You also launched a product store. What types of products do you carry and how does that compare to my local health food store?
Scott: The Gluten-Free Mall offers far more options than most health food stores or supermarkets can offer, and certainly much more is available now, both online and in stores, than ever before. Additionally, the quality of products offered now are far superior to anything that was available at the time we began. When we started, most items were mix-based, and mixes were the primary market. Now, finished products are the norm, which means much less preparation time for consumers.
Vic: There are more and more products labeled “gluten-free,” but with a variety of labeling practices and no legal definition yet, how does Celiac.com select items for the store?
Scott: It is true that the term “gluten-free” currently has little real meaning, and its use is mostly voluntary, and based on the perception that the FDA’s upcoming regulations will require gluten content to be below 20 ppm. Like supermarkets, we don’t test to verify the gluten-free status of the products we sell; we rely on the manufacturers to accurately represent their products to us as being gluten-free, or suitable to be sold on The Gluten-Free Mall. Many companies are now routinely batch testing to make sure their products will comply with the anticipated regulations, and many are also undertaking gluten-free certifications, some of which require a higher level of scrutiny and batch test down to 5 ppm.
Vic: In your view, what criteria should the gluten-free community consider when buying food, while waiting for FDA regulations to be finalized and enacted?
Scott: Each person should decide what is best for their diet, but in general gluten-free consumers should consider whether or not the items they buy are batch tested for gluten down to at least 20 ppm, which, in my opinion, is the current gold standard for using the term “gluten-free” on the label. If you only eat foods that are labeled “gluten-free,” you may unnecessarily eliminate many items that are naturally gluten-free, and you won’t necessarily be safer, as items with “gluten-free” on the label do occasionally test positive for gluten. In general, there is wide availability now of safe gluten-free products.
Vic: You’ve also launched a magazine. How does the content differ from what is available on Celiac.com?
Celiac.com has published the Journal of Gluten Sensitivity for over 10 years, and it contains more in-depth articles than appear on our site, or on most sites or magazines. Many of the Journal’s authors are internationally recognized for their unique contributions in the area of gluten sensitivity, and many are doctors of medicine (or have doctorate degrees) and/or are well-known authors, researchers, support group leaders or dietitians.
Vic: Are there some future plans you want to tell us about?
We hope to launch a Celiac.com app soon. It should be very helpful for those with smart phones and tablets.
Vic: Thank you for your time today, and for your long-term and ongoing commitment to the gluten-free community!
You can find more information and stories about Scott’s ventures with Celiac.Com at http://www.celiac.com/categories/History-of-Celiac.com/ and visit his online store at www.glutenfreemall.com.