Focus on gluten: Avoiding it requires diligence
Chances are you know someone who avoids eating gluten, the stored protein found in wheat, rye, barley and several other common flours.
These are the people who spend more than $2.6 billion a year on gluten-free food at the supermarket. The ones who pass on cake and cookies at the office, think twice about pastry and pizza and bring their own food when you invite them over for dinner.
They have their reasons. Some believe they are gluten sensitive and say they feel better, physically and emotionally, when they don’t eat it. Others, those with celiac disease, cannot consume even a tiny amount of gluten without pain or damage to their small intestines.
Estimates are that as many as 18 million Americans, 6 percent of the population, are gluten sensitive. But because there is no reliable, scientific test for the condition, many doctors remain skeptical, says Dr. Peter H.R. Green of the Celiac Disease Center at Columbia University. (Take his quiz on celiac disease here.)
“Many physicians would roll their eyes and say, ‘God, another crazy person with food sensitivities,'” he says, but evidence is mounting that gluten sensitivity exists apart from celiac disease. He and other experts recommend first ruling out celiac disease and other forms of intestinal inflammation and then trying a gluten-free diet. Critics argue that people who jump on the gluten-free bandwagon without first consulting a doctor may be avoiding gluten unnecessarily, paying more for gluten-free food and wasting time and energy on monitoring their gluten intake.
On the other hand, an estimated 3 million Americans, about 1 percent of the population, do have celiac disease, an autoimmune disorder that leaves them more vulnerable to a variety of complications, including cancer. That’s more than the number of people with epilepsy (2.7 million) or Parkinson’s disease (1 million), according to the University of Chicago Celiac Disease Center.
More than 300 medical complaints have been associated with celiac disease. One physicians’ manual, “Recognizing Celiac Disease: Signs, Symptoms, Associated Disorders & Complications,” includes a 164-page chart. Experts say doctors often misdiagnose celiac, which means it can take years for patients to find out they have it. Then begins the painstaking process of eliminating gluten from their diets.
“When you get a celiac diagnosis, the next thing you do is get a stronger pair of glasses,” says David Ward, 65, of Salem. “You have to read all the fine print on every label.” Ward says he’s discovered gluten in places most people wouldn’t look for it: in a common over-the-counter pain reliever, in the adhesive on imported envelopes, in bulk bins of Halloween candy prominently labeled “gluten-free” but manufactured on equipment also used to process wheat.
Ward suspects he’s had celiac disease for years without realizing it, figuring that his main symptoms — feeling tired, depressed or angry — were “normal.” Since his diagnosis in 2004, his wife, Nancy, 65, has reorganized their kitchen, creating a gluten-free zone and dedicating several drawers to a variety of alternative flours and baking mixes, all marked “GF” and dated. She bakes her own gluten-free bread, packs gluten-free pretzels on road trips and takes gluten-free dishes to church potlucks, though fears of cross-contamination mean the couple don’t go out much anymore.
“I’d make him a dish of baked beans and put it on the table,” she says.
“And by the time I got there, some croutons from the Caesar salad had fallen in the beans,” he adds, shaking his head.
Despite their best efforts, Ward says the longest he’s managed to “stay clean” (avoid eating gluten) is about eight months. He says he knows within five or six hours that he’s been contaminated, and it can take five or six weeks to feel good again.
“But, you know,” he says good-naturedly, “it does no good to complain.”
Patty Hatten, 53, of Northeast Portland doesn’t complain either, though she has struggled with abdominal pain before and since her celiac diagnosis in 2001. Hatten suspects that despite her best efforts, she’s “getting gluten somewhere.”
“I’ve checked everything I put on my skin, and all my medications,” she says. Her kitchen is divided between her gluten-free area and “glutopia,” where her husband and grown children prepare their food. She says she’s meticulous about keeping her kitchen and cooking utensils clean, and she hasn’t let celiac disease keep her from baking. She’s adapted and perfected some recipes — the biscotti she baked at Christmas, for example — and experimented with new ones.
“This is a good time and a good place” to live with celiac disease, she says. Portland offers an abundance of fresh, whole “real” food free of gluten.
“I love food, I love preparing food,” Hatten says, but she thinks about celiac disease and its implications “all the time.” She doesn’t eat out in cafes and restaurants very often, and when she’s invited to friends’ homes she takes her own food.
“I want to say to them, ‘Please don’t be offended, I want to enjoy your company,'” she says. “This disease could shorten my life. This diagnosis has changed my world.”
Dr. Lisa Shaver has heard that before. As manager of the Portland branch of the Gluten Intolerance Group, she’s part of a national network that supports patients with gluten disorders. The Portland group meets on the second Saturday of each month at Legacy Emanuel Medical Center in North Portland.
“I guess I’m an optimist, a ‘the-glass-is-half-full’ kind of person,” says the naturopath and acupuncturist who has been gluten-free for four years. She sees a gluten disorder as an opportunity to eat better, to shun processed food and focus on healthier choices. And, she adds, a diagnosis of celiac disease often comes as a relief to patients.
“The knowledge that there is a reason why people have been so ill is usually elating. These people aren’t crazy, and they have found a reason for their symptoms,” Shaver says. “And it’s managed by diet, great news, not an onslaught of new medications.”