[ back ]
Celiac Disease: learning to live gluten-free
|
STAFF PHOTO BY SARAH SCHILLACI
Michael Bretan, pictured with his mother, Theresa. Michael was diagnosed with Celiac disease last year.
|
Some people are just short. Some have cramping and bloating. Some people are tired, some are anemic, some are infertile, and some people have no symptoms at all.
Little wonder, then, that Celiac disease is one of the most undiagnosed and mistreated disorders in the .
Medical experts used to think that one in 5,000 Americans had Celiac disease, which is a permanent intolerance to wheat. Today that number has shot up to one in 133, and that rate may be higher in other countries.
More “gluten-free” food products have been popping up on supermarket shelves recently, but having Celiac disease means more than passing on a slice of pizza—it can mean the difference between a life of misunderstood symptoms and gastrointestinal distress and a high quality of life.
Not just an allergy
Wendy Jeshion, the co-section chief of pediatric gastroenterology and nutrition at
Hackensack
University
Medical
Center , explained that—first and foremost—Celiac disease is not simply a wheat allergy. It is a permanent intolerance to gluten.
A disease of the small intestine, it leads to the malabsorption of nutrients. The causes of Celiac disease are largely unknown. There are certain genetic and autoimmune factors involved, but some people may be born with Celiac disease while others develop it later in life, like after pregnancy or an illness. And while awareness is growing about the disease, many people grow up with unexplained problems without knowing they are gluten intolerant.
The rate of diagnosis remained low over the years, explained Jeshion, because “people didn’t realize that you can have almost no symptoms.”
Although people can come in with poor growth, tooth enamel issues, diarrhea, or a vast range of symptoms, others may undergo a routine blood test to suddenly discover that they have the disease. For those patients—some of whom are beyond childhood—telling them to change their entire diet is a battle.
And, added Jeshion, “It’s not as easy as just not eating a bagel.”
The gluten protein exists in places other than wheat, barley, and rye—it’s in certain medications, additives, and can contaminate utensils and plates. Treating Celiac disease requires a complete elimination of gluten. While a brownie or a cookie might just cause a stomachache for an evening, the long-term consequences of eating gluten can lead to seizures, osteoporosis, miscarriage, and blindness.
Of course, it is entirely treatable, but Jeshion confessed that parents tend to have the same reaction when their children are diagnosed.
PANIC!
Theresa Bretan of Oradell was in Shop Rite when she got the call that her son, then 3-year-old Michael, had tested positive for Celiac. Her response?
“I fainted!” she laughed, remembering.
After leaping out of the womb at a healthy eight and one half pounds, Mikey had stayed small. Doctors told Bretan and her husband, David, not to worry, so they waited. And when he still didn’t grow, they waited some more.
When Mikey was 3 and still painfully small, doctor’s told the Bretans to wait some more. David Bretan finally said, “I don’t like that answer.”
They took Mikey to an endocrinologist who ran a battery of blood tests. And a week later, she got the Shop Rite call. And that was when the panic set in.
Christine Mednick’s experience was slightly different—her son Louis was entirely asymptomatic until he caught a stomach bug last year at age 6. His parents put him on the generic BRAT diet (bananas, rice, applesauce, and toast) to settle his stomach. When they took him off of the diet, the flu symptoms came back.
Something didn’t seem right to the Mednicks, so they took Louis into an allergist for blood work.
Like Theresa Bretan, Christine Mednick was “totally in shock” when she got the call that her son had tested positive.
“I thought I had a healthy kid,” she said. “Thank God we found out now.”
Although the blood tests pointed to Celiac, both Louis and now 4-year-old Mikey had to continue eating gluten for several months until they were able to get endoscopies.
“You need to be on gluten to test positive for Celiac,” explained Jeshion, or else the patient can get a false negative. An endoscopy for Celiac disease involves putting a tube through the patient’s mouth and into the small intestine, where a biopsy is taken.
“I was so afraid to put my little boy through that,” said Mednick, but both she and Bretan emphasized the importance of going through with the endoscopy to get a concrete answer for their kids.
Cooking gluten-free
Draw a rectangle around the perimeter of a supermarket: you’ll hit the dairy, meat, and produce departments. Those are generally Celiac-safe. Venture into any of the other aisles and it’s either a Celiac danger zone (salad dressings and sauces) or a Celiac nightmare (bread aisle, anyone?).
There’s only one course of action: read the labels. And when in doubt, call the company.
When eating, a person with Celiac disease can never have wheat, rye, or barley. Oats prepared in a “dedicated” oat facility—one where no other gluten products are processed—can be consumed. A brand like Quaker, however, may have traces of gluten on its oats.
Despite the limitations, eating healthfully and deliciously on a gluten-free diet is far from impossible. Unfortunately, it’s also one of the least budget-friendly diets out there.
“We spent an inordinate amount of money on gluten free products,” recalled Mednick of the first few months.
While a box of white flour rotini goes for around one dollar, a gluten-free brand (made from rice, quinoa, spelt, or various other ingredients) can cost more than three times that.
Not to mention that a gluten-free cookie may pale in comparison to the real deal.
The logistics of keeping Louis’ and Mikey’s diets completely gluten-free have proven difficult for Mednick and Bretan. Cross-contamination is a danger not only in food processing plants, but also in the kitchen and in restaurants. Crumbs can shift on plates, residue can be left on Tupperware containers, and even the most innocuous items can have traces of gluten in them.
On a pasta night early on in the diet, Bretan accidentally touched the spoon she was using for the gluten-free pasta into the water for the regular pasta. She thought little of it, but Mikey had diarrhea the next day.
And so both families take the necessary steps to prevent flare-ups and possible internal damage. Mednick invested in “toaster bags” for making regular toast (which, in turn, resulted in her and her husband just eating less toast).
With grocery stores carrying more gluten-free items (check the health food sections), as well as specialty stores such as Whole Foods, Trader Joe’s, and the Happy Carrot in River Edge, acquiring gluten-free food items has been getting easier for families.
In the classroom
“School still makes me nervous,” admitted Bretan.
She has good reason. With snacks, birthday parties, school trips, and kids just being kids, gluten is ubiquitous in any school environment. Mikey heads off to school each day with a lunchbox full of snacks (on a recent morning, he toted gluten-free cookies, cheese sticks, and potatoes). In his second-grade classroom, Louis Mednick has a box of treats that he can turn to when other kids bring in birthday goodies. Mednick has gotten used to bringing in gluten-free cupcakes on party days.
Both mothers praise the work of teachers and administrators at their schools for working to keep their sons healthy.
Christina Fanelli, as the school nurse at
George
White
Middle School in Hillsdale, maintains communication with parents of Celiac children. With parental permission, she talks to teachers to let them know that when a kid asks to see the nurse, he should be allowed to immediately see the nurse.
“They can have abdominal pain or cramping, so they can use the private bathroom that is located in my office,” she said.
Neither Mednick nor Bretan have had any medical crises since their sons’ diagnoses, but that doesn’t mean there aren’t disappointments. Bretan remembers last year’s tree lighting as a general disaster: first Mikey couldn’t have a candy cane. Then he couldn’t eat the donuts at the reception. The evening ended with Mikey and his older sister leaving the event in tears.
This year, she is prepared to tote along gluten-free Munchkins, and is hoping for the best.
Life goes on
Having Celiac disease is far from the end of the world.
“It’s easy to [survive],” said Jeshion. “You just have to have all the right tools.”
For Bretan, that’s a strong support system of other parents, something she was able to find over the Internet. Mednick felt better once she put Louis in the care of doctors familiar with Celiac disease, and both of them have taught their sons to say “no, thank you” when they are offered foods they can’t have.
So far, they’re doing well: Mikey has gained weight and is less whiney, and Louis knows to ask about ingredients.
“He just kind of rolls with the punches,” said Mednick. “If this is the worst thing that ever happens to him, that’s fine.”
Sarah Schillaci's e-mail address is schillaci@northjersey.com
[ back ]
