Beatrice Rosen
Celiac Disease and Gluten
Word Count: 1,514
SAY GOODBYE TO GLUTEN
Sara Stavile slurps up the last strand of spaghetti. The oleaginous scent of cheap Italian
food follows her down the hallway to the bathroom, where she kneels over the toilet bowl.
The strands slip out her throat and into the shallow water basin.
Then Stavile runs throughout the neighborhoods surrounding Knox College in Galesburg,
Ill. The 18-year-old undergraduate listens to her stomach gurgle and growl, cringing as
intestinal knots tighten with each stride.
Eat, puke, run. The daily cycle persisted for years, Stavile recalls. She was depressed,
underweight, bulimic, and found herself back at home only months into her freshman year.
In March 2012, Stavile caught the culprit behind her miserable relationship with food:
gluten, or otherwise known as a protein found in wheat, barley and rye. When she followed
a friend’s advice to try the gluten-free diet, “I started feeling a heck of a lot better,” Stavile
recalls. Diarrhea and bloating gone, she filled out to an appropriate weight and “stopped
hating food, which led to my bulimia, and then being hungry all the time. I finally ended
that nasty cycle.”
Stavile, now 20 and a transfer student at Emory University, is one of the 20 million
Americans that suffer from non-celiac gluten sensitivity. She could also be one of the 2
million that suffer from celiac disease, but cannot afford to pay the deductible on her health
insurance to go in for a diagnosis.
The National Foundation for Celiac Awareness, or NFCA, estimates that three-quarters of
Americans with the condition, like Stavile, remain undiagnosed. Still, from 2000 to 2010,
studies show that celiac disease diagnoses rose by more than 50 percent. As the gluten-free
diet remains the only treatment for celiac, the continual increase also affects patients’
family and friends, pharmaceutical companies, and restaurant and business industries. Yet
some patients on the diet continue to suffer from gastric distress, implying that even the
smallest particles of gluten pose intestinal problems.
Amid the continuous research behind the confounding autoimmune condition, doctors
agree that one main factor contributes to the growth in diagnoses: an increase in
awareness.
“We thought celiac disease was a rare disorder, but when we started to learn more about it
and what kind of symptoms it can give you, we realized we were looking at the tip of the
iceberg before,” says Dr. Alessio Fasano, director of the Massachusetts General Hospital
Center for Celiac Research.
Atlanta-based gastroenterologist Dr. Jeffrie Kamean also calls celiac a “tip of the iceberg”
disease. “There’s so much more under the water,” he says. “This applies to celiac because
we are now looking for and finding those people just underneath the surface that are
harder to diagnose.”
As suggested by data from the center, Dr. Fasano says that the number of diagnoses will
double every 15 years. Thus, so will the number of people who adhere to the gluten-free
diet.
Doctors say many patients who first receive a diagnosis do not even know what celiac
disease or gluten is.
“When I heard about my possible condition, I read and did a lot of research on the glutenfree diet because I wanted to make sure that I knew what I was getting into,” Stavile says.
The protein gluten attacks the lining of the small intestine. Tiny, finger-like projections
called villi line the small intestine. When someone with celiac disease eats a food that
contains gluten, the protein triggers white blood cells to attack the villi. The intestinal
lining erodes until it’s ultimately worn smooth.
Villi help digest foods, so losing them to celiac evokes substantial repercussions. This
includes iron deficiency, arthritis, reduced bone density, and even infertility, neurological
disorders, some cancers and other autoimmune diseases.
The consequences of untreated celiac disease motivate most patients to strictly abide by
the gluten-free diet. However, Dr. Kamean acknowledges that cutting out foods like pasta,
bread, pastries, crackers and beer can be frustratingly difficult when going out to eat.
Stavile recalls that “there are some times when I show up to social events and there won’t
be things for me to eat, which can be a problem.”
Still, Dr. Fasano acknowledges that when he founded the center 15 years ago, “Nobody
knew about celiac disease, there was no readily available information on how to do the
gluten-free diet, and so patients handled the daunting exercise very poorly. It was a
tremendous impact on their lifestyle.”
Now, the landscape has completely changed. Mintel International Group Ltd., a privately
owned, London-based market research firm, reports that the $10.5 billion gluten-free food
and beverage industry has grown 44 percent from 2011 to 2013 as the rate of celiac
disease diagnoses, awareness of, and interest in gluten-free foods increases.
Furthermore, August 2013 FDA regulation on gluten-free product claims will now set the
industry standard and make it easier for consumers to shop for their gluten-free lifestyle.
The major force driving the market growth is not celiac disease victims, but rather ordinary
people who are turning to gluten-free products. Dr. Fasano says perceptions of gluten-free
foods have moved from being bland, boring substitutes for gluten-containing products to
everyday items that appeal to those with and without a gluten allergy. Three-quarters of
consumers who do not have celiac disease or sensitivity to gluten eat these foods because
they believe they are healthier than their gluten-containing counterparts, despite the lack
of any scientific research confirming the validity of this theory.
According to Mintel, this health halo will continue to propel the gluten-free category over
the next few years. More companies will join the category and produce higher-quality foods
that have a broad appeal.
Crucial in the evolving understanding of this health halo surrounding the popularity of
gluten-free foods were the findings in a 2011 study conducted in Australia. Published in
The American Journal of Gastroenterology, the study involved 34 people who suffered from
irritable bowel syndrome, did not have celiac and were on a gluten-free diet. Some were
given gluten-free baked goods, while others were given muffins and bread with gluten.
Those who ate gluten said they felt significantly worse.
Medical experts call this condition, like what Stavile may have, non-celiac gluten sensitivity.
According to the NFCA, gluten sensitivity differs from celiac disease in that it occurs when
the immune system directly attacks gluten, rather than attacking its own intestinal lining
tissue. The body views the protein as an invader and fights it with inflammation both inside
and outside the digestive tract.
Dr. Kamean says gluten sensitivity is a wide and unseen epidemic undermining the health
of millions of people. It is less a diagnosis than a description for those who do not have
celiac, but whose health improves on a gluten-free diet and worsens again if gluten is eaten.
Avoiding gluten gives these people added energy and alleviates chronic ills.
Dr. Fasano estimates about seven percent of the U.S. population may be gluten-sensitive.
Therefore in a culture where the average adult eats about five meals per week in a
restaurant, Mintel reports that the best way restaurants can attract more customers is to
add “gluten-free” labeled menu items.
Stavile occasionally dines at Saba, an Atlanta-based restaurant that has a gluten-free menu.
General manager Akilah Holyfield says business was slow when they first opened nine
years ago. Now, customers come daily for the gluten-free options, particularly the pasta.
“I get a lot of repeat business, so customers seem to like it and are happy,” Holyfield says.
Yet restaurants with gluten-free options must take particular precaution in preparing their
food. This is because “celiac disease is not a food allergy that you develop symptoms
proportionate to the amount of gluten that you consume,” Dr. Fasano says. “For an
individual with celiac disease, a crumb or the entire loaf of bread makes no difference. You
get the same response in the immune system.”
This is the main reason abnormal bowel morphology persists in a noteworthy number of
celiac disease patients being treated with a gluten-free diet, according to the Journal for
Food and Nutrition Sciences. Even the ingestion of miniscule gluten particles presents
potential harm, and “some restaurants do not realize how strict the diet has to be in order
to be effective,” Dr. Fasano adds.
Dr. Kamean acknowledges how difficult it is to be 100 percent gluten-free. However, he
says that for a majority of his patients, “within a couple of weeks of changing their diet,
they’re just a whole new person. Their blood tests become normal, so does everything else
in their body, and it’s amazing how much different they feel.”
Stavile is one of these patients.
Amid schoolwork and social life, she continues to run. Only now her pace is significantly
faster, and the monsters in her bloated stomach do not moan with each stride. She killed
them with the gluten-free diet.
Having also fully recovered from her bulimia, Stavile says she has a great relationship with
food.
“Recovering from my bulimia got 90 percent easier because I wasn’t dealing with feeling
terrible all the time, and hating food for making me feel that way,” Stavile says. “Being on
the gluten-free diet has legitimately changed my life.”