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Gluten-free: 'Confusing' fad or matter of life and death?

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JoAnn Farb prepares a meal at her Lecompton home on a recent day. She and her family have eaten a completely gluten-free diet the past several years, after her daughter was found to be gluten-sensitive. Farb says the diet has provided heath benefits for the rest of the family as well.

For Jenna Collins, the gluten-free craze is a double-edged sword.

On the one hand, it has significantly improved the gluten-free options available at stores and restaurants in Lawrence. On the other, it has sown confusion about what gluten-free really means.

Collins, who was diagnosed with celiac disease about five years ago and gets gastrointestinal problems from consuming gluten, has to be diligent that the food she's being served actually is free of gluten, a protein found in wheat, barley and rye.

"Even the act of having a piece of toast or roll on the plate can trigger celiacs," said Collins, 28, who operates the Gluten-Free Lawrence, KS Facebook page. "I've had to send entire salads back because they had croutons."

Trying to flesh out whether something is truly gluten-free can be exhausting, so Collins sometimes just gives up.

"Five years in, it's still embarrassing to ask the waiter if he knows what gluten is," she said. "I often look the other way for the sake of a normal meal out."

A diet free of gluten is the only known treatment for celiac disease, an autoimmune disorder of the small intestine that causes digestive problems. People with non-celiac gluten sensitivity and wheat allergy can also benefit from the diet.

But even though the rate of celiac diagnoses is on the rise, it may be surpassed by the popularity of the gluten-free diet. While the trend has provided celiac sufferers with a wider range of culinary options, health experts note that gluten-free doesn't necessarily mean healthy.

About 1 in 130 people have celiac disease, so it is a fairly common ailment, said Lawrence gastroenterologist Teresa King. But going gluten-free can make it difficult to tell whether patients actually have the disorder or are just seeing improvements in their overall health from the diet, which is high in fruits and vegetables and low in carbohydrates.

"I think there is a lot of confusion about who benefits from a gluten-free diet and who might simply feel better on a gluten-free diet," she said. "It's not a bad diet to be on. It's not an unhealthy diet. But it can confuse making an accurate diagnosis down the road."

People shouldn't assume a gluten-free label means a product is healthy, as it can have just as many, or more, carbohydrates than a similar product containing gluten, said Linda Rippetoe, a dietician for the Lawrence-Douglas County Health Department. And those who avoid gluten-containing grains should be sure they're getting those nutrients elsewhere, she added.

"A lot of the carbohydrates from whole grains have important vitamins and minerals," Rippetoe said. "You don't want to get deprived of those things that are important for your good health."

Local health educator Hilary Kass says the gluten-free trend is a good thing if it introduces people to a wider variety of whole grains (such as millet, teff and amaranth) and weans them off processed foods in general. A lack of diversity in the modern diet might be a reason for the increased incidence of gluten intolerance, she noted.

"It's not that wheat is necessarily a bad grain. It's just that, over the years, it's become so highly processed and people eat so much of it," said Kass, who used to operate a gluten-free bakery before last year joining Hilary's Eat Well, a Lawrence manufacturer of gluten-free veggie burgers.

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JoAnn Farb prepares a gluten-free wrap at her Lecompton home on a recent day.

Lauren Moore, a doctoral student in the Kansas University sociology department, has studied why so many people without celiac disease have decided to go gluten-free. She found that since people often report different benefits from the diet, the list of symptoms it relieves continues to grow, whether or not they are actually attributable to a reduced intake of gluten.

Moore has also talked to subjects who worry about the unintended consequences of the gluten-free diet's popularity.

"Several participants with celiac disease reported that they will sometimes say 'I am deathly allergic to wheat' rather than 'I am gluten-free' because they fear that servers won't take their needs as seriously if they say 'gluten-free,'" she said.

Nearly a decade ago, JoAnn Farb's daughter started getting increasingly bad stomach aches. Doctors couldn't figure out what was going on. After a friend mentioned that it could be caused by gluten, Farb got her daughter tested; she was found to be sensitive to gluten.

Farb, a Lecompton health educator and author, put her daughter on a gluten-free diet, and her digestive problems went away. After learning that people with a gluten sensitivity are genetically predisposed to it, Farb also got herself, her husband and her other daughter checked for it. The tests all came back positive. Now, the entire family is gluten-free, relying on a diet heavy on vegetables and legumes.

"We never looked at it as deprivation. We looked at it as a huge blessing," Farb said. "We were fortunate to not only have this information but be living in a time and a place where it's so easy for us to go gluten-free."

While Farb worries about the focus on gluten taking it away from foods that may be more harmful to the body, like those containing genetically modified organisms or animal protein (the Farbs are all vegan), she encourages others to find out whether going gluten-free can be a positive in their lives.

"If people have specific symptoms they're trying to address that may fall within the realm of gluten-caused, I think the new standard needs to be, 'Try a gluten-free diet,'" she said.

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