Is it dangerous to self-diagnose a gluten-free diet?

  • Article by: KEVYN BURGER , Special to the Star Tribune
  • Updated: July 7, 2013 - 6:36 PM

Seeking a healthier lifestyle, more people are becoming glued to gluten-free products. But is self-diagnosing dangerous?

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FILE - This Nov. 11, 2008, file photo, shows gluten-free frozen pizza, just one of hundreds of items at Gluten Free Trading Co. in Milwaukee. Schools, restaurants and anyone else serving food are more vulnerable to legal threats over food sensitivities after the Justice Department determined that severe food allergies can be classified as disabilities under federal law. People who suffer from celiac disease don't absorb nutrients well and can get sick from the gluten found in wheat, rye and barley. Celiac is a diagnosed illness that is more severe than gluten sensitivity, which some people self-diagnose. Millions of people are buying gluten free foods because they say they make them feel better, even if they don�t have a wheat allergy.

Photo: M.l. Johnson, Associated Press - Ap

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One morning last fall, Erin Warhol began her day by reading a magazine article about gluten intolerance. What she read stopped her from eating her typical breakfast of two slices of whole-wheat toast.

“I saw that this was something I needed to explore,” said the 48-year-old Stillwater woman. “I passed on the bread, and within 48 hours I felt a dramatic difference.”

For people diagnosed with celiac disease, consuming gluten — a protein found in wheat and a few other grains — creates stomach misery and sometimes permanent intestinal damage.

It’s estimated that just 1 percent of Americans have the autoimmune disorder, while another 6 percent of the population is considered gluten-sensitive.

Yet the number of people seeking gluten-free alternatives is skyrocketing. Restaurants and food producers are feeding the demand by making room on menus for new items and adding wheat-free products to grocery stores. At the same time, some celebrities have been razzed for promoting the trend as a dieting option.

Clearly, gluten has people’s attention.

“More patients are coming in with this as a concern,” said Dr. Cynthia Sherman, a gastroenterologist at Minnesota Gastroenterology. “They’ve Googled it and self-diagnosed.”

That said, some health experts say going gluten-free might be dangerous for people who haven’t been properly diagnosed.

Taking the test

Sherman said that the first step she takes when gluten intolerance is suspected is to order a blood test. She often then performs what she calls the gold standard — an endoscopic biopsy of the small bowel. It’s an outpatient procedure, which takes 15 minutes and requires no laxatives.

The biopsy shows whether the villi, the microscopic finger-like structures that line the small bowel, are flattened and damaged, a sure sign that the patient has celiac disease.

“This damage limits their absorption of nutrients,” Sherman said. “They could be eating the healthiest diet available, but getting none of the benefits.”

Eliminating gluten can allow the villi to heal and return to normal. Sherman said that some people alter their diet, feel better and move ahead, without seeing a physician. She called this a dangerous solution.

“If it is celiac disease, going gluten-free makes it difficult to establish the diagnosis,” she said. “By eliminating gluten, the lining can heal and return to normal so it looks like they don’t have the disease. But this is a lifelong issue with long-term health ramifications. It should be diagnosed by a doctor, and the patient should be followed by a health practitioner.”

Carolyn Denton, licensed nutritionist at the Penny George Institute for Health and Healing, sees many clients who have self-diagnosed and changed their diet.

“They start eating gluten-free products and they feel better. They might drop weight and have fewer stomachaches or less joint pain. But then they feel worse again,” Denton said.

“They are eating gluten-free products, but when wheat is removed, it is often replaced with corn byproducts, and many people have a corn sensitivity, too. All of a sudden they’re reacting to that.”

‘Devastating’ effects

Self-diagnosing is one thing. Dieting is another. The tabloids drive Amy Leger crazy. She shudders when she sees stories about celebrities suggesting that a gluten-free diet is Hollywood’s newest get-thin secret.

“People see that and think, ‘Maybe that’s the diet I should be on,’ ” said the Blaine mother of two. “It creates confusion about how serious this is for people with celiac disease.”

Leger got a crash course in the devastating effects of gluten intolerance when her daughter Emma, now 14, developed extensive health problems around her first birthday.

“She was inconsolable: gassy, vomiting all the time, losing weight,” Leger said. “She had a bloated belly, like the famine babies.”

After a series of false starts, celiac disease was diagnosed.

“She was gluten-free within the week. The crying stopped and we had our baby back,” Leger said. In the intervening years, Leger started The Savvy Celiac, a website devoted to the challenges of living with the disorder.

For those with celiac disease, even a speck of gluten can lead to inflammation and intestinal damage (such as chronic diarrhea, osteoporosis, infertility and, rarely, cancer of the small bowel).

It’s not enough for them to eat gluten-free toast; they must also make sure it pops out of a toaster not used for bread containing wheat. To avoid cross-contamination, they must eat food cooked in alternate pots and pans, stirred with different utensils.

That’s where the celebrity endorsements of the slimming powers of a gluten-free diet can create confusion.

“It gets my goat when I hear about stars who give up gluten to lose weight,” said Cassie Weness, licensed nutritionist at Nutritional Weight and Wellness. Her two children have celiac disease. “These celebrities drop pounds because they’ve gone low-carb. They’re ruining it for the rest of us. It leaves people in food service thinking gluten-free is no big deal, but it’s serious for my kids and my clients [with celiac disease].”

Gluten-free or not?

Warhol, the Stillwater resident, made an appointment to see her physician shortly after she ate those last two pieces of toast. The doctor gave her a blood test, which came back negative.

“Together we decided that since this was working, I should stick with it,” she said. “What I know for a fact is that when I eat gluten, my body doesn’t feel good.”

There is no shortage of information for consumers seeking information about food allergies and sensitivities. “Wheat Belly,” a book that promotes eliminating gluten, is a fixture on the New York Times Advice, How-to and Miscellaneous bestseller list.

Nutritional Weight and Wellness, a St. Paul-based nutrition education company, began offering a class called “Going Gluten Free the Healthy Way” last year; it quickly became the most popular course of the dozen classes on the roster.

“Everyone knows someone who feels better because they’ve taken gluten out,” said Denton. “People will do this on their own. They might feel better, but they don’t always know what they are doing.”

 

Kevyn Burger is a Minneapolis-based broadcaster, podcaster and freelance writer.

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