The gluten-free life


by Melissa Pasanen, Free Press, 10 Oct 2006

Munching on crisp croutons from a bowl on the kitchen table, 8-year-old Mariah Hanson waited impatiently for the supper she had helped make with her mom, Diane.

The lasagna and bread sticks were sending out good smells from the oven and the Caesar salad -- to be topped with any croutons that might remain -- was ready.

After Diane served her daughter a plate of lasagna and salad, Mariah carefully pushed them apart to prevent the two from touching: a typical kid move from a kid whose dietary needs are not all that typical.

Just more than 10 months ago, the Hanson family of South Burlington learned that the reason Mariah had endured almost three years of intermittent terrible stomachaches and bouts of extreme digestive upset was because her body cannot tolerate gluten, a protein found in wheat, rye and barley.

The average kid diet is full of gluten -- from the obvious sources such as cereals, sandwiches and cookies to more surprising things such as many ice creams, most brands of root beer and even hot dogs.

"My stomach didn't feel good whenever I ate something," Mariah explained.

"It was awful," recalled her mom. "They thought it was acid reflux and put her on Pepcid AC, but it kept coming back. We finally got referred to Dr. D'Amico."

Michael D'Amico, a pediatric gastroenterologist at Fletcher Allen Health Care, diagnosed Mariah with celiac disease.

The disease, he explained during a phone interview, "is an intolerance of the gastro-intestinal tract to any grains with gluten in them. Technically speaking," he continued, "it's not an allergy, but it has similar traits. It is considered an auto-immune disease because something is triggering the patient's body to attack itself." (See sidebar for more details.)

When patients are referred to him for celiac disease evaluation, D'Amico starts with a blood test to check for antibodies that indicate gluten-intolerance, and then follows up with a small bowel biopsy. The relative ease and availability of the blood tests has been a boon to health professionals and patients in recent years during which the profile and diagnosis of celiac has increased quite dramatically. However, the biopsy is still recommended to confirm the blood test results, which have some margin of error.

D'Amico cautions people who suspect that they or their child might have celiac not to presumptively alter their diet before seeking medical advice. "It can obscure the ability to make a diagnosis," he said, "and it can lead to problems of malnutrition and micronutrient deficiency."

Living with knowledge

Getting a diagnosis was a relief in many ways Diane said, but "at first it was kind of a shock, too."

Celiac is a manageable, but lifelong, condition with no cure and no treatment other than maintaining a strict gluten-free diet.

Within three days of identifying the culprit, Mariah was doing much better physically but the restrictions took getting used to. "I felt better because my stomach felt better," Mariah said as she grabbed a second breadstick, but, she added, she definitely also felt: "This isn't fair."

"The good news is that you don't have to be medicated," D'Amico said, "but it is a tough diet to stick to."

As the Hansons shared their story, dinner guest Julia Clements sat across the table nodding her head in understanding as she and her daughter, Jesse, 9, enjoyed the lasagna made with brown rice pasta, the croutons cut from special bread made without wheat, and the chewy breadsticks baked from frozen gluten-free dough.

Jesse is a third-grade classmate of Mariah's at Chamberlain School, but the two families share more than that.

Julia Clements was diagnosed with celiac disease about two years ago, after almost seven years of increasingly severe anemia following the birth of her twins. Her condition proved unresponsive to standard iron supplements and she was finally headed for a blood transfusion when a hematologist asked if she'd been tested for celiac.

When her daughter Jesse started suffering from stomachaches last year, Clements had her tested. Since celiac is passed on genetically -- although it does not show up in every generation -- it was no surprise when the blood test came back positive.

That two girls in one grade of one local school have celiac is not as unusual as one might expect.

"It's more common than we think," said Jim Vecchio, director of the gastroenterology department at Fletcher Allen. For many years, he explained, the disease was under-diagnosed.

"When I was in medical school, it was considered really, really rare," he said, "but now research shows it could be present in as many as 1 in 150 people." The numbers vary, he said, but the bottom line is clear: "It's not rare."

Vecchio has worked to raise awareness of the disease among other health professionals, acknowledging that diagnosis is still slow. Recent studies from Columbia University have indicated that it takes an average of nine years from onset of symptoms to diagnosis in the United States.

One of the challenges, Vecchio added, is that "symptoms can be wide and various. ... It's more than tons of diarrhea and weight loss, and it is often mistaken for Irritable Bowel Syndrome."

Label reading

As more people are diagnosed with celiac, it is also becoming clear that some who have the gene can remain largely unaffected, or have a lower level of reaction until something triggers their body to respond more consistently and seriously to gluten.

Julia Clements is a case in point. She had tolerated low-level symptoms for years. "My stomach had always hurt," Clements said, "but I blamed it on whatever I was eating."

She was probably right to blame it on whatever she was eating. Gluten shows up in so many processed foods that one of the constant struggles for those with celiac is figuring out if a product is permissible even if the obvious grains aren't listed in the ingredients.

"Grocery shopping used to take one hour and now it takes two," Clements said, "and it's hard just to pick up something quick for lunch."

Clements and Diane listed off some of the surprises they'd found. Snickers and M&M's are OK. Three Musketeers, according to their manufacturer, are OK, too. Sun Chips are not allowed, but Cool Ranch Doritos are gluten-free. Coke and Pepsi are both OK.

There is an increasing number of specialty, gluten-free foods available, but they're pricey Diane and Julia agreed, and "some of them really taste awful," Julia said with a grimace. "You just can't make a pizza that tastes like pizza. And bagels, too."

Eating out at restaurants is also a huge challenge. Both families praised the Outback Steakhouse for its gluten-free menu, which has detailed information and many options.

The Hanson family is headed to Walt Disney World this winter and, like any 8-year-old, Mariah is pretty excited. But it's not just the rides that have her all keyed up. Her mother called and spoke with the guest relations department about Mariah's dietary needs and they reassured her that there would be plenty of options. Most exciting of all, Mariah shouted out with glee, "Ice cream brownie sundaes!"

As the girls dug into the fudgey, gluten-free brownies Julia had baked, they reflected on the challenges of being celiac. Julia promised to send more brownies to school later in the week when birthday cupcakes were expected for a classmate.

"It's not as hard as you think if you find things that taste good," Jesse said.

"It's tough but you can deal with it," Mariah agreed.