The faces of celiac disease: Area residents grapple with gluten

• What is celiac disease?

What is celiac disease?
• Tim Menard and his mother Rosemary Menard

Tim Menard of Crookston and his mother, Rosemary, 88, both have Celiac Disease, a digestive disorder in which the body can not process certain nutrients. Tim was diagnosed four and a half years ago and his mother was diagnosed in her fifties. Dorothy Edwards / Grand Forks Herald

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• Celiac Disease: An elusive diagnosis

Not a day goes by that Tim Menard of Crookston isn’t tempted by some snack he can’t eat.

Goodies like these donuts, cake or cookies contain gluten, which Menard must avoid for the sake of his health. He has celiac disease, so does his mother, Rosemary Menard, and three of his six siblings.

Celiac disease is a digestive disease that impairs the body’s ability to absorb nutrients.

In the most serious cases, gluten triggers celiac disease. The condition causes abdominal pain, bloating and intermittent diarrhea. Those with the ailment can suffer weight loss, fatigue, rashes and other problems.

It was once considered extremely rare in the U.S. But about 20 years ago, a few scientists began exploring why celiac disease was less common here than in Europe and other countries. They concluded that it wasn’t less common — it was under-diagnosed.

On the rise

More recently, a research team led by the Mayo Clinic’s Dr. Joseph Murray looked at blood samples taken from Americans in the 1950s and compared them with samples taken from people today, and determined it wasn’t just better diagnosis driving up the numbers.

Celiac disease actually was increasing.

Indeed, the research confirms estimates that more than 1 percent of U.S. adults have it today, making it four times more common than it was 50 years ago, Murray and his colleagues reported recently in the American Journal of Gastroenterology.

That translates to nearly 2 million Americans with celiac disease.

Celiac disease is different from an allergy to wheat, which affects a much smaller number of people, mostly children who outgrow it.

Changing diets

Scientists suggest there may be more celiac disease today because people eat more processed wheat products like pastas and baked goods than in decades past, and those items use types of wheat that have a higher gluten content. Gluten helps dough rise and gives baked goods structure and texture.

It could also be due to changes made to wheat, Murray said.

In the 1950s, scientists began cross-breeding wheat to make heartier, shorter and better-growing plants. But the gluten in wheat may have somehow become even more troublesome for many people, Murray said.

That also may have contributed to what is now called “gluten sensitivity.”

Doctors recently developed a definition for gluten sensitivity, but it’s an ambiguous one. It’s a label for people who suffer bloating and other celiac symptoms and seem to be helped by avoiding gluten, but don’t actually have celiac disease.

Celiac disease is diagnosed with blood testing, genetic testing or biopsies of the small intestine.

Going gluten-free

Menard, 60, was diagnosed with celiac disease four years ago.

“I’d probably had symptoms for quite a while,” he said, but he dismissed them as side effects of medications.

Five years ago, he moved back from Seattle to his hometown to take care of his 88-year-old mother, a retired Polk County nurse who’s been living with celiac disease for nearly 40 years, he said.

Based on her knowledge and experience, they determined he had celiac disease.

“I have terrible GI (gastrointestinal) distress,” he said, “painful cramping and explosive diarrhea.”

Because he adheres to a gluten-free diet, his symptoms are usually nuisance reactions, he said. “When I cheat, I pay for it.”

He lost 30 pounds after switching his diet, he said.

Menard knows what he’s missing. He grew up in a family of “awesome” bakers and cooks, he said.

“Imagine your life without spaghetti or lasagna or donuts? Who can live a life without brownies?”

Going without those treats produces “a sense of loss,” he said. “You go through a little grieving. It’s kind of recurrent; you’re reminded more often than you care to be that you can’t have certain things.”

But, with some adjustments and increased options on the market, he said, “Mom and I make some pretty tasty food.”

With celiac disease, there’s a range of reactions, he said. He’s not as sensitive to gluten as his mother is; she must stick to foods made in a gluten-free facility.

On the plus side, eating gluten-free is “generally a really healthy diet,” he said.

Adolescent celiac

Madison Crane, 16, of Crookston was diagnosed with celiac disease six years ago. Her paternal grandmother also has it.

“My joints were hurting, I had headaches and I was a really picky eater. I didn’t eat the normal things that kids do,” said Crane, who also has Type 1 diabetes which sometimes coincides with celiac disease.

She has had to work out special arrangements at school to maintain her gluten-free diet, and said her friends “are really awesome about it — they know what’s safe for me to eat.”

Because she has to be “super-careful” about what she eats, she often asks food-servers extensive questions about ingredients and how foods are prepared.

“It’s kind of hard, being younger and asking all these questions,” she said.

Sometimes, restaurant workers bring out bags, so she can read labels to become aware of any ingredient that might make her ill. Some suppliers may also process foods that do contain gluten which could lead to cross-contamination.

“I sort of ignore the looks. I want to eat, and I want to be healthy.”

Demand leads to options

With increasing awareness and growing demand, area grocery stores are catering more to the needs of people seeking gluten-free foods. The growing ranks of suppliers are providing more options for consumers.

“The best option is the Hugo’s on 32nd Avenue South in Grand Forks,” Menard said. “The manager there keeps her eye out for what’s new.”

Eating out also is difficult “because there are not many places that offer these foods or they don’t handle foods in a gluten-free way,” he said.

Some restaurants offer gluten-free items, such as Whitey’s in East Grand Forks which offers five such entrees, said David Raymond, general manager.

“Lately, there seems to be more people asking for (gluten-free food),” he said.

At the nearby Blue Moose, his former employer, management has initiated a separate gluten-free menu in response to demand, Raymond said.

“A lot of people don’t have any issues with the disease,” he said, “but may be asking for gluten-free because they think it’s healthier.”

Many churches are responding to their members’ special needs by offering gluten-free waters in the Communion ceremony.

At Sharon Lutheran Church in Grand Forks, which began to offer the alternative wafer in 2005, Pastor Lynn Ronsberg said the decision is all about addressing people’s needs.

“I’ve been ordained for 33 years and had never heard of (celiac disease),” she said. “We need to be careful. For some people, they can’t eat anything that has touched gluten.”

The church’s pastors direct those with gluten-sensitivity to a specific station during the service.

Offering an alternative option allows people with this condition to fully participate in Communion, she said. “It’s a matter of, ‘There’s something I can eat; I can be part of the Meal.’”

Tags: celiac disease, gluten, accent, updates, health, lifestyles, celiac