Throbbing joints, stabbing heartburn, and chronic diarrhea, fatigue, and depression are bad enough. But when you’re suffering inside an information black hole—surrounded by uninformed, eye-rolling disbelievers,no less—life can seem hopeless.
But there’s good news for people with celiac disease and gluten sensitivity. The “dark ages” are finally giving way to an age of enlightenment, propelled by dozens of Web-based resources that are helping people live with renewed hope and vitality. As always, though, finding the best resources is key.
Linda Miller, an on-the-go entrepreneur in lakeside St.Joseph, Michigan, credits a host of Internet sites for answering the inevitable “What next?” after her gastroenterologist delivered a surprise diagnosis of celiac disease (also known as gluten intolerance or celiac sprue). Confusion quickly turned to shock when Miller learned she would need to follow a strict regimen devoid of the dietary staples wheat, rye, and barley—for the rest of her life.
Unnerved but undeterred,Miller found a welcome reception at We Are Gluten Free (www.weareglutenfree.com). She credits its “great recipes, insightful articles, and expert advice” for opening her eyes to the realities of celiac disease but acknowledges the learning process is neverending. “When I first went gluten free, I gained 6 to 7 pounds,” Miller explains. “Eventually, I learned just how important it is to read the labels, even on glutenfree foods, as prepared products tend to be high in carbs and sugars. Today I’m focusing more on fresh fruits and vegetables, and I’m feeling great.”
Echoing a common sentiment, Miller finds especially helpful articles that identify foods good for celiacs, rather than those that simply inventory the long list of items to avoid.
Another of her favorite websites is Rudi’s Gluten-Free Bakery (www.rudisglutenfree.com), which scores big points for “excellent recipes” and cost-shaving coupons.
The similar-sounding blog aggregator We Gluten Free (www.weglutenfree.com) allows visitors to hopscotch between scores of blogs, tweets,and news stories from one convenient,customizable platform. Blog topics have included California Pizza Kitchen’s gluten-free menu, sending kids with celiac disease back to school, and a tantalizing recipe for easy pecan cookies.
And there’s CeliacCentral.com, a nationally ranked e-powerhouse, boasting some 11,000 online fans and 4,500 Twitter followers. Run by the highly respected National Foundation for Celiac Awareness,this site offers an A-to-Z selection of cooking and health education videos and links to hot food products and staffs an “Ask the Dietitian” corner with a panel of licensed experts.
Need inspiration for dinner? Among Celiac Central’s video offerings are Thai Kitchen Grilled and Glazed Chicken, Eggplant Casserole With Crunchmaster Topping, and Prickly Pear Rudi-fied Goat Cheese and Rhubarb Treats. Incidentally, that last entry nabbed grand-prize honors in Rudi’s Gluten-Free Bakery’s Unbelievably Good Gluten-Free Recipe Contest.
Other CeliacCentral.com notables include an acclaimed, five-part video series on celiac disease as well as a video that helps decipher medication labels to prevent accidental gluten exposure. Elsewhere,you’ll find a special section on women’s issues and a step-by-step guide on how to claim tax deductions for gluten-free purchases.
“It’s incredible how the whole gluten-free community has adopted social media as both a support platform and a place to obtain information,” says Cheryl McEvoy, Celiac Central’s online content manager. “Twitter is a great spot for sharing news, whereas Facebook lets me stimulate dialogue by asking for personal experiences.”
McEvoy is buoyed by the abundance of online information but counsels caution. “There is a lot of wonderful information and a lot of misinformation out there, so people need to be careful,” she says.
When Scott Adams formally launched Celiac.com in 1995 on a shoestring and a prayer, several celiac support groups dismissed his venture as quixotic. “Quite frankly,” he recalls, “none of them even thought the Internet would last.”
Today, no one is laughing. Analytics show the California resident’s user-friendly site boasts some 50 million hits (and 300,000 unique visitors) each month.
For Adams, Celiac.com is more than an information clearinghouse;it’s part labor of love, part life mission. “In 1993 to 1994, my doctor was just out of medical school and never brought up celiac disease even though I had classic symptoms,” he recalls. Later, when Adams insisted on being tested, his physician initially balked, asserting the condition was exceedingly rare. Today,Celiac.com visitors learn that nearly 3 million Americans have celiac disease, although an estimated 95% are undiagnosed or misdiagnose, and most needlessly struggle for years before receiving appropriate medical intervention.
One indication of the immense popularity of Celiac.com’s forum is seen in the discussion category “Celiac Disease—Coping With,” which contains more than 11,000 topics and 111,000 user responses. The numbers are massive, but Adams isn’t surprised. “Once people get diagnosed with celiac disease, they want to learn, share information … and get online support,” he says. Celiac.com’s Gluten-Free Mall features more than 1,000 food items from 150 manufacturers.
For Miller, toeing a strict dietary line has taken on new urgency. “Like me, many celiacs end up with osteoporosis because the damage to the villi in our small intestines prevents us from absorbing nutrients needed for strong bones. What I learned is I had not been absorbing the [prescription] Boniva or the extra calcium supplements I was taking. The excellent resources I found online are helping me to control this disease and to live a happier,healthier, more active life.”