When Shirley Siegel was diagnosed with celiac disease 20 years ago, it was a lot harder to find gluten-free food in Bend. For people with celiac disease or any level of gluten intolerance, it’s essential to avoid gluten, which is found in wheat, among other things.

“There was about two kinds of bread that were available. About two types of rice, spaghetti or macaroni were available. Even the health food stores, which were practically none, had few (gluten-free) ingredients.”

The 80-year-old woman, who has lived in Bend off and on since 1956, long ago taught herself to bake palatable breads, muffins and cookies using alternative grain flours.

“It was very difficult to eat out,” she recalled. Although it’s still a challenge for a person with celiac disease to find many suitable restaurant menu items, there are more options now, she said. “And, when you tell a waiter or someone that you need gluten-free, they understand now. At that point no one understood,” she said. “They hadn’t heard the terminology.”

Celiac disease and gluten intolerance are no longer unheard-of conditions, and the market has responded. Many restaurants and pizzerias offer and advertise gluten-free options on their menus. A growing number of bakers are pumping out products from gluten-free kitchens. Even some traditional grocery stores have a whole “gluten-free” section.

Celiac disease and gluten sensitivity

Celiac disease kicks in when gluten from wheat or other products causes the immune system to attack and flatten the villi in the intestines, which are needed for the body to absorb nutrients from food. When the villi are destroyed, it can lead to malnutrition, osteoporosis and other more serious health problems that result from not absorbing the nutrients in food. Symptoms appear in many different ways depending on the person and can include many kinds of gastrointestinal discomfort, malaise, joint pain, headaches, weight loss and depression.

On the other end of the gluten-intolerance scale is a less-severe gluten sensitivity that will create any number of miserable conditions, including bloating, gas or diarrhea, but will not destroy the villi or put the person at risk of malnourishment.

Celiac disease is more common than previously thought, according to health professionals including Gayle Vanderford, an advanced nurse practitioner in the gastroenterology department at Bend Memorial Clinic.

“In the last 10 to 15 years we’ve learned about it, so we’ve gotten better about diagnosing it,” Vanderford said.

For example, those in the medical profession used to think celiac mainly affected people of Eastern European descent. But it can affect a lot more people than that, she said. Also, it used to be that some people would be considered iron-deficient or anemic, whereas now more immunologists or gastroenterologists are more likely to examine whether celiac is the reason they’re not absorbing nutrients.

Celiac manifests in people with a genetic predisposition to the autoimmune disease. The National Institutes of Health reports that if one person in a family has celiac disease, one of every 22 people in that family also has it. About 1 in 133 people has it in the United States.

Celiac disease is diagnosed through a blood test that picks up the antibodies, Vanderford said. People who have gluten sensitivities, not true celiac disease, don’t have the antibodies. A second test to confirm celiac disease includes taking a sample of the small bowel or intestines for biopsy. That test can show whether the villi are destroyed. The person has to be eating gluten at the time of the tests.

The only way to treat the disease or avoid the pain of gluten intolerance is to avoid gluten, which is easier said than done.

Gluten

Gluten is in “everything” according to people who can’t tolerate it. Not only is it in common grains such as wheat, which is the base of so many foods, it can be found in a thickener called “modified food starch,” which is found in some sour creams, salad dressings and ketchups. Manufacturers are legally required to include a “contains wheat” warning on the label of a product that contains something such as “modified food starch.”

Occasionally, cosmetics such as lipstick or some medications have gluten products in them, but to find out for sure a person might have to call the manufacturer. (For information about medications: www.gluten freedrugs.com.)

In restaurants, even gluten-free entrees can be cross-contaminated if the cooks are not careful. For example, if the gluten-free bread is used in the same toaster as regular wheat bread, the wheat can contaminate the gluten-free product. Someone with a lesser degree of sensitivity might be able to tolerate that much gluten. Someone with true celiac could go into seizures.

There are many people who do not have the disease but who clearly feel better when they don’t eat gluten.

“They’re in the gray area of intolerance,” Vanderford said.

Because more people are interested in avoiding gluten, even the non-celiac population, it’s driven up demand for gluten-free products.

“A lot of people now are choosing gluten-free as a lifestyle, which makes it easier for those of us that don’t have a choice,” said Chris Frey, a 63-year-old Bend resident who in recent years realized she was gluten intolerant.

But despite the growing popularity of gluten-free food, Susan Walker, who owns the new Gotta B Gluten Free bakery in Bend, said, “This is not a fad. It’s not like the South Beach diet. This is real.”

She explained that the gluten proteins are part of the chemical structure of certain grains, such as wheat and barley, and it can’t be separated out of the wheat.

Gluten serves as a glue that binds all the elements in a recipe together, Walker said. Wheat’s gluten is responsible for the chewy texture that’s desirable in bread, pasta and pizza crusts. When wheat is left out of a product, its flavor and texture change. People judge food on its appearance, texture and taste, she said. Sometimes, without good texture, it’s just not worth eating, Walker said.

When her husband was diagnosed as gluten intolerant about 14 years ago, Walker started experimenting in the kitchen.

White rice flour used to be the only substitute to wheat flour, but it has a dry, sandy texture.

“Everything was so dry,” she said. Now, she uses a garbanzo-fava bean flour, tapioca flour, almond meal, and even soy flour in a few things. But those flours are expensive, and costs get passed on to the consumer. A cupcake costs $2.50.

Walker and others theorize that the upsurge in gluten intolerance has been at least in part brought on by agricultural societies developing more gluten-rich wheat. Our bodies — especially those with a predisposition to the disease — can’t tolerate it anymore. She sees a lot of middle-age and older customers who developed an intolerance after eating wheat for 50 or 60 years.

Frances Towle, an owner of True Wellness Life who has a master’s degree in acupuncture and Chinese medicine, said repeated exposure to environmental toxins — from agricultural chemicals to stress — can trigger the autoimmune disease in bodies with the potential to express that celiac gene. Many kinds of allergies are on the rise, she said, as our bodies and our immune systems are challenged by a bombardment of toxins.

“We have a threshold for what the body can tolerate,” Towle said.

Living with celiac disease

Cathy Jasper, 51, discovered that she had celiac disease about 10 years ago. Her family ate a lot of pizza and boxed cereals. She had intense stomach pain and bloating nightly.

“The pain would be excruciating,” she said, clutching her stomach with the memory. After years of seeing different doctors about it, she visited a naturopath who told her to stop eating gluten and sugar.

Her youngest child, Ryan, was 3 at that time. He cried a lot and had awful skin rashes. One pediatrician told her to rub Wesson oil on his face, she said. He threw extraordinary fits. It was chalked up to colic. Sometimes she laid her body on him to calm him down, but otherwise, nothing helped.

When Jasper changed her diet, she instantly felt better. Inevitably, after she went gluten-free, the whole family followed suit. The effect on Ryan was immediate. “He was a different kid. Things got so much better,” she said.

It was difficult when Ryan was younger to say “you can’t” about so many foods, she said. Ryan felt like the odd kid when he had to take his own cake to someone’s birthday party, he said. Jasper still packs him a cooler of food if he’s going to a friend’s home for a sleepover. But now most of his friends understand, and if they don’t, he’s able to explain.

If Ryan, now 13, eats gluten, his ears turn red and his attitude changes. He gets so depressed his thoughts have turned suicidal. These reactions kick in predictably after eating gluten, either intentionally or accidentally. It’s usually about a three-day window between the eating of the offending food such as ice cream or Oreos, and the depth of the crash, which for him starts as irritability and spirals into dark and irrational thoughts.

Jasper and Ryan took a chance and shared a small piece of carrot cake at a birthday party recently. She got a cold sore. His stomach hurt.

He misses eating normal sandwiches because gluten-free bread is pretty hard and crusty. At home, Jasper spends a lot of time preparing healthy food. They eat a lot of millet, quinoa, buckwheat, eggs and vegetables. They avoid most sugar. They don’t eat out much.

“The good thing about celiac is that it’s made us eat so healthy,” Jasper said. “We are getting so strong.”

What is gluten?

Gluten is the common name for the proteins in specific grains that are harmful to persons with celiac disease. These proteins are found in all forms of wheat, including durum, semolina, spelt, kamut, einkorn and faro. They are also in rye, barley and triticale.

Gluten-free grains that can be used instead include rice, corn (maize), soy, potato, tapioca, bean, garfava, sorghum, quinoa, millet, buckwheat, arrowroot, amaranth, teff, flax and nut flours.

Source: The Celiac Disease Foundation, www.celiac.org

Look for a gluten-free bakery near you

Local gluten-free retail bakeries:

• Gotta B Gluten Free, 215 N.W. Hill St, Bend; 541-280-5961

• Angeline’s Bakery, 121 West Main Ave., Sisters; www.angelinesbakery.com, yumyum@AngelinesBakery.com or 541-549-9122

These bakeries do not have a retail store front, but wholesale their goods to other retailers:

• Tula Gluten-free Baking Co., Bend; www.tulabaking.com, shipping@tulabaking.com or 541-306-1250

Products sold at Townshend’s Bend Teahouse, Backporch Coffee Roasters locations, Pizza Mondo, Bom Dia and Blenders; plans to open a retail location this summer.

• The Celiac Maniac, Bend; www.theceliacmaniac.com, sales@theceliacmaniac.com or 541-350-6088

Products sold at Newport Market, Natures, Whole Foods, Cornucopia Natural Foods in Redmond; uses no white rice.

• The Cravings Place, Bend; www.thecravingsplace.com, queenofthekitchen@thecravingsplace.com or 541-388-2253

Sells just-add-water mixes for making cakes, cookies, breads and more; products found at Whole Foods, Natures, Fred Meyer, Ray’s Food Place and Newport Avenue Market.

More options

Looking for local restaurants, grocers or bakeries that sell gluten-free items? Visit www.glutenfreeregistry.com.

Places to research celiac disease

• American Celiac Disease Alliance www.americanceliac.org

• American Dietetic Association www.eatright.org

• Celiac Disease Foundation www.celiac.org