by Sophia McDonald Bennett

Gluten free diets and food choices have boomed in the last few years. Is it a fad, or are gluten free diets here to stay?

It was two days after the Thanksgiving of 2004, and Springfield resident Marleen Burk was pale, weak, and could no longer take the feeling of jackhammers pounding in her head. She checked into a local hospital, where she was treated for anemia. Her doctors were concerned about the underlying cause of her condition, so they ran some tests before sending her on her way.

It wasn’t until a month later that the Springfield resident got the news that changed her life: she had Celiac disease, a disorder that makes the body unable to tolerate gluten. The Gluten Intolerance Group, a support group and source of research-based information on Celiac disease, estimates there are 2 million people in the United States with the condition. They also estimate that for every person who is diagnosed with the disease, another 80 people are undiagnosed. 

Everywhere you turn, it seems a new gluten free product or restaurant has popped up. In the Willamette Valley, bakeries from Salem to Creswell are changing their menus to include gluten free offerings. Some churches are using special communion wafers to pacify the concerns of parishioners. Packaged Facts, a leading market research company, reports that sales of gluten free products increased from $935 million in 2006 to $2.64 billion in 2010. 

Why do you hear so much about Celiac disease these days? Is it on the rise, or is cutting out gluten just a fad? How do you know if your health problems are caused by Celiac disease or something else? And for people who do have the disease, is there any hope of a cure – or even a decent sandwich?  

What is Celiac disease?

Celiac disease is a genetic autoimmune disorder. When someone with the disease eats gluten (a protein found in wheat, barley, and rye) the body attacks the villi, which are small, hill-like projections that line the small intestine. Over time, damage sustained by the villi makes the intestine less able to absorb the nutrients from food. As a result, the person may suffer from malnutrition, weight loss, chronic fatigue, anemia, premature osteoporosis and other serious problems. Over the long term, Celiac patients who don’t eliminate gluten are more likely to suffer from non-Hodgkin lymphoma and other cancers. 

While physical concerns are the most common complaint, there’s a growing body of evidence that links Celiac disease with mental illness as well. Studies have shown connections between Celiac disease and dyslexia, autism, dementia, and schizophrenia. A study by Helmut Niederhofer and Klaus Pittschieler, which was published in the “Journal of Attention Disorders” in 2006, followed 132 people with symptoms typically associated with ADHD. A group of participants was asked to stick to a gluten free diet for six months. At the end of that period, nearly all reported a decrease in symptoms. 

Some people who feel ill when they eat gluten may have a less severe condition known as gluten intolerance. These folks may experience bloating, diarrhea, constipation, or acid reflux when they consume gluten. Although these symptoms are uncomfortable, there is no scientific research demonstrating that gluten intolerance damages the small intestine. 

Many people who carry the Celiac gene don’t have a problem with the disease until it is “triggered” by a viral infection, injury, or other trauma to the body. It’s possible for a person to be fine for years then seem to develop a gluten allergy overnight. 

Nadine Grzeskowiak is one of those people. The Corvallis resident was a trauma nurse who had always been in excellent health. Then in 2003 she contracted pneumonia. A cascade of strange symptoms followed in the wake of the disease, including chronic infections, hair loss, a rash, weight gain, and finally multi-system organ failure. “I got out of the shower one day and gave myself six months to live,” she says. 

A big believer in the importance of diet, Grzeskowiak stopped eating gluten. Within months her symptoms were mostly gone. Today Grzeskowiak has a private practice, Gluten Free RN, where she educates people about Celiac disease and helps those who are recently diagnosed understand the changes they must make to live a healthy life. 

Celiac Disease or Something Else?

Celiac disease can be hard to detect, and it’s not unusual for a person with the condition to receive an incorrect diagnosis at first. Irritable Bowel Syndrome, spastic colon, and Crohn’s disease all have similar symptoms and are commonly confused with Celiac disease. The University of Chicago’s Celiac Disease Center estimates that it takes, on average, four years for a person with Celiac symptoms to receive the correct diagnosis. 

There are several ways to test for the disease, including a blood test, a DNA test, and a biopsy of the small intestine (which can show damage to the villi). A gastroenterologist or another trained practitioner will need to interpret the results of your test. 

However, Grzeskowiak notes that the testing isn’t always accurate. Blood tests may show a false negative up to 70 percent of the time, and there’s no definitive test to prove a person does not have the disease. Despite all the evidence to the contrary, Grzeskowiak has never had a positive test for Celiac disease. 

Still, simply cutting gluten out of your diet is not the ideal way to find out if you have Celiac disease. The Gluten Intolerance Group notes that to receive a positive diagnosis, you must have been consuming gluten recently. Since Celiac disease is genetic, people who are diagnosed are in a better position to educate family members and encourage them to get tested. And it’s possible that your symptoms could be the result of another condition which, if undiagnosed, will continue to cause problems. 

If you’ve had a negative test for Celiac but aren’t confident in the results, talk about your options with your doctor. They may be able to request a different type of test or help you determine the best way to eliminate gluten on an experimental basis. Erin Tucholke, a Registered Dietician at Sacred Heart Medical Center at RiverBend in Springfield, notes that many people don’t realize how complicated it can be to completely eliminate gluten from their diet. 

Living With Celiac Disease 

Maintaining a completely gluten free diet is the only way to control Celiac disease, and the pesky ingredient is more pervasive than one might originally think. The day Marleen Burk found out she had Celiac disease, “I went to my pantry and started pulling things off the shelves. They were almost bare by the time I finished,” she says. Many processed foods, from marinades to soups to lunch meats, have small amounts of flour in them. Oats are often cross-contaminated with wheat or other grains because they’re grown and processed together. Eating in restaurants can be especially tricky, since traces of flour left on tables or even in the air can trigger a reaction. 

The good news is that as the condition becomes more common, there are an increasing number of gluten free foods on the market. Most natural food and some conventional grocery stores are carrying gluten free flour mixes, pastas, and cereals. Grains that have always been safe for Celiacs, like quinoa, amaranth, teff, and buckwheat, are becoming more mainstream and easier to find. Labeling has also gotten better, with more manufacturers stating that their foods are gluten free. 

Bakeries and restaurants designed to meet the needs of the “GF” consumer are also starting to pop up. Blue Monkey Gluten Free Bakery in Corvallis is completely free of gluten, as well as other potential allergens such as soy and peanuts. Owner Teresa Cochran offers a slew of delicious products including breads, muffins, cakes, pie and pizza crusts, doughnuts, and her award winning brownies. 

“We get a wide spectrum of people in our shop,” Cochran says. “Most have gluten sensitivity or Celiac disease, and others are just curious. Many people who come in just love the taste of our products.” 

New Dawn Deli and Bakery in Eugene has a variety of lunch options as well as breads and pastries. Visitors can enjoy a sandwich, filled crepe, pizza, or enchiladas – things that would normally be off-limits when someone with Celiac visits a restaurant. Owner Dave Martin notes that many patrons can’t believe they can order anything on the menu. “A lot of people haven’t had a sandwich in five years, so this is a huge deal for them,” he says. 

On the Rise, or Rising in Popularity? 

Grzeskowiak says she’s definitely seen an uptick in people with Celiac disease in recent years. She cites several reasons for the increase. One is that wheat has been bred to contain more gluten. New hybrids contain between 50 percent and 200 percent more gluten than older varieties. People are also exposed to gluten more than they used to be. “We didn’t used to put wheat in our toothpaste or our shampoo,” she says. The more a person is exposed to gluten, the more likely they are to have a reaction. Greater awareness about the condition and tests that can pick up on even mild cases of Celiac disease are also possible reasons for the increase. 

Still, there are some misconceptions about the benefits of living gluten free. While cutting down on refined carbohydrates is always a good idea, there’s no reason to completely eliminate gluten from your diet unless you have a medical reason, Tucholke says. 

“I’ve definitely seen an increase in people who want to eliminate gluten. I do see people who are on a gluten free diet but can’t tell you why. What I see more often is people who do it to lose weight.” It’s a poor strategy, she reports, because many of the gluten-free foods on the market still have a high glycemic index and are going to promote weight gain rather than weight loss. 

Martin hears a similar story in his restaurant. “Some people are jumping on the bandwagon because they see people with Celiac disease are skinny. But that’s because they’re not getting nutrition. So I think the fad dieters will drop off at some point.” 

While scientists are making progress in identifying the causes of Celiac disease, Grzeskowiak doesn’t believe they’ll find a cure in the near future. The good news is that, with recent advances in cooking and baking, people with Celiac disease have more options for a delicious, healthy lifestyle than ever before. 

Sophia McDonald Bennett works part-time at St. Vincent de Paul and part-time as a freelance writer. She lives in Eugene.

See NCD categories:

Bakeries & Baked Goods

Grocers – Organic & Natural Foods

Gluten Free Foods & Services

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