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Living with celiac

As national celiac disease diagnoses increase, Paly students with the condition find an expanding gluten-free market

posted October 28, 2009

by Camille von Kaenel of Verde

Art by Yelena Kasianova

Students with celiac disease must abstain from eating foods with gluten such as wheat bread or pizza.

Four foot eight in middle school, Palo Alto High School senior Nathaniel Munger remembers the teasing he received. His height scared him because he didn't know the cause of his condition, which could have been due to a key hormone deficiency or a life-threatening disease. When the doctors proposed a concrete reason and solution, he felt relieved and joyful that he could finally grow. The doctors had diagnosed him with celiac disease. Following their suggestions, he eliminated bread, pizza, cookies and more from his diet. He grew eight inches in the following year and left the embarassment and uncertainty of being short behind.

Celiac disease is an autoimmune intolerance to gluten, a protein found most commonly in wheat, rye and barley. Responding to the rise in celiac diagnoses and awareness, the gluten-free market, which provides alternatives to traditional bread and other wheat foods for people with celiac, has been growing rapidly. Researchers have found that the amount of celiac diagnoses has been rising in the U.S. to levels four times the levels 60 years ago, according to a study made by the Mayo Clinic, a clinic specializing in the celiac disease. According to national statistics, 14 of the 1800 students at Paly may have celiac disease and one out of 133 Americans have a celiac diagnosis.

"Diagnostic technologies are getting better, and doctors are more aware of the disease," Stanford Professor Chaitan Khosla says, giving a possible explanation for the rise in celiac diagnoses.

Paly senior Adi Katz was diagnosed with celiac at nine years old. She had been having strong recurring stomachaches for several years.

"I was having trouble with dinner but not with ice cream, so my mom thought I was faking it," Katz says.

The usual symptoms include abdominal problems such as stomachaches, bowel movements and nausea, according to Stanford Professor of Medicine Gary M. Gray.

However, a person who has celiac can show none or just a few of these symptoms. Because the symptoms associated with celiac are also associated with other diseases, many people with celiac never receive a positive diagnosis and do not make the switch to a gluten-free diet, which would eliminate the symptoms and risks of celiac.

In Katz's case, her doctor recommended a blood test, which Gray says searches for antibodies related to celiac disease. When the test came back saying she had celiac, she made the switch to a gluten-free diet.

"My diet is basically vegetables, meat and rice," Katz says. She, though already tall, showed a similar growth spurt to Munger's after she began to eat gluten-free — she grew six inches in one year.

Paly freshman Caroline Martignetti received her celiac diagnosis four years ago for a different reason — her sister had symptoms so the whole family took the tests. The tests for Martignetti, her sister and her mother came back positive.

If a family member has celiac, the chances of having the disease as well increase by 5 to 15 percent because celiac is linked to a genetic predisposition.

"There are background genes that are necessary but not sufficient to cause the disease," Gray says. Celiac is a permanent and irreversible autoimmune disease affecting the digestive system, more specifically the small intestine, not a gluten allergy.

However, the specific cause of celiac is still unknown. Other factors, such as surgery, severe trauma, or pregnancy often trigger the actual onset of the disease and the symptoms vary from person to person.

"Like many autoimmune diseases, it takes a while for the disease to start," Khosla says. "In this case, one's immune tolerance to gluten has to break."

Munger took the blood tests because he showed another alarming symptom — delayed growth. When a person with celiac ingests gluten, an autoimmune reaction damages the villi, or the lining of the small intestine.

"It [gluten] destroys their intestinal lining, causes inflammation in the gut and malabsorption of nutrients," Khosla says.

The damaged villi can not absorb the nutrition that passes through the person's system, and this undernourishment sometimes leads to delayed growth, as in Munger's case, or a variety of other conditions such as anemia or osteoporosis, the reduction in bone mass.

Having celiac disease entails finding alternatives to traditional gluten-containing breads, cakes, cookies, pasta, pastries and more.

"It [gluten] is the most abundant protein in the human diet," Professor Khosla says of gluten.

"It [the gluten—free diet] was really hard when I was young," Katz says. "I couldn't eat cakes at birthday parties or take food from friends."

She eventually founded a support group for kids with celiac in Palo Alto, creating a local branch of the national organization ROCK (Raising Our Celiac Kids).

"Once a month we would get together and bake and have a gluten-free party," Katz says. "It was great because we all could never eat at our friends' parties and here we finally could."

With 30 to 40 kids attending along with their parents, the ROCK meetings brought together many community members with celiac. Though she doesn't lead the group in Palo Alto anymore, the gluten-free parties helped Katz get through the early years of her diagnosis.

Martignetti finds it especially difficult to abstain from all of the traditional gluten foods.

"Every time I look at a pizza it takes incredible will power not to snatch it off of whoever's plate its on and stuff it in my mouth," she says.

Even if they have recognized the difficulty of the gluten-free diet at the beginning of their diagnoses, the students acknowledge that finding gluten-free products has become easier with the expansion of the gluten free market and the growth in the awareness of celiac.

A study published by Packaged Facts reveals that the gluten-free market has expanded nearly 28 percent every year since 2004, and is expected to continue to rise. The market, currently standing at $800 million each year, is expected to reach $1.7 billion by 2010.

"Whole Foods carries a lot of [gluten free] products," Munger says. "Their gluten-free aisle has doubled since I started [the gluten free diet]."

Along with other grocery stores such as Trader Joe's, Whole Foods stresses the cleanliness of its facilities to avoid gluten contamination. In 2004, Whole Foods even created the Whole Foods Market Gluten-Free Bakehouse "to keep up with the volume needed to statisfy customer demand" for gluten-free food, according to the Whole Foods Web site.

The Food Allergen Labeling and Consumer Protection Act, passed by Congress in 2004, requires that the top 10 allergens, which include wheat, be listed on processed foods, which makes it easier to single out and stay away from gluten foods.

"It [celiac] is actually fairly common now," Munger says. "People are recognizing that a lot of people have it."

The growing awareness and curiosity surrounding the disease and the gluten-free diet has led people to eat gluten-free even if they do not have the disease.

For example, when Katz received her diagnosis for celiac, the whole family decided to go gluten-free.

"I hardly ever eat any processed foods anymore," Katz says. "We make everything from scratch." She prefers homemade recipes adapted from old favorite gluten recipes over other manufactured gluten-free products, even if the range of gluten-free products available in grocery stores is expanding.

According to Katz, a gluten-free diet may lead to a healthier lifestyle because of the clear correlation between gluten foods and foods high in carbohydrates.

"If you go on a gluten-free diet, you'll just find yourself eating less donuts and cakes," Munger says.

Martignetti has also noticed the new curiosity surrounding the gluten-free diet and celiac disease.

"It's funny because loads of my friends and their parents now try and bake me gluten-free products or make me pizza just so they can try them out," Martignetti says.

As the gluten-free market has shown a great expansion in recent years, Katz hopes that the trend towards awareness and availability of products will continue as many opportunities in the gluten-free market have yet to be developed.

"There are no completely gluten-free restaurants, and I hope there will be even more gluten-free products in the future," she says. "It's an untapped market."

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