WATCHING WHAT SHE EATS—Danielle Nebel, left, has celiac disease and must avoid eating all foods with gluten, a protein found in wheat, barely and rye. Her mother, Karen Nebel, works to raise awareness about celiac disease among other parents.
Eating nothing but gluten-free foods requires self-discipline. But people who have celiac disease must follow the strict diet or face the consequences, says Danielle Nebel, a junior at Calabasas High School who was diagnosed with the autoimmune disorder when she was 2½ years old.
Celiac disease is a genetic condition in which the lining of the small intestine is damaged from eating gluten, a protein found in wheat, barley and rye.
Over time, the damage prevents absorption of nutrients.
Danielle said that two hours after she eats any meal containing gluten she gets a stomachache and throws up.
“It’s like food poisoning. . . . You’re always thinking about that in the back of your mind,” she said.
The only treatment is lifelong adherence to a strict gluten-free diet, avoiding foods with wheat, rye and barley, such as bread, pasta and baked goods.
“People don’t really take celiac disease seriously,” Danielle said. “They don’t understand that the gluten-free diet is not a choice.”
Danielle was diagnosed shortly after the birth of twin siblings. At first the doctor thought she was having a reaction to the new additions to the family, said Danielle’s mother, Karen Nebel.
But Nebel didn’t accept that idea.
“I just knew there was something wrong,” said the Calabasas mother of three who works to raise awareness about celiac disease to help other parents recognize the signs.
“It is very important to recognize the symptoms because, if left untreated, celiac disease can lead to such conditions as intestinal cancers,” she said.
As a person with celiac disease, Danielle had to learn to eliminate all products containing gluten. She can’t eat what the other kids do.
She brings her own snacks and lunches to school and parties, and when eating out she has to make sure that her food is handled with extra care.
“You have to always doublecheck and ask restaurants to make sure it’s prepared separately and gluten free.”
Even trace amounts of the protein can cause a reaction, Danielle said.
“When I go get ice cream, I have to ask them to wash the scoop so it’s not contaminated. It’s a little awkward, but I’d rather say something and not get sick.”
May is Celiac Disease Awareness Month.
According to the Celiac Disease Foundation, the condition affects 1 in 100 people worldwide, yet 83 percent of them do not know they have it.
Marilyn Grunzweig Geller, chief executive officer of the foundation headquartered in Woodland Hills, said that Danielle is a good advocate for celiac disease due to her firsthand experience and knowledge about the illness.
“She is confident, assertive and an advocate for other people. That makes her truly unique at this age,” Geller said.
Danielle was a junior counselor at camp CDF. She’s been selected to participate in a panel discussion at the 2014 CDF National Conference and Gluten- Free Expo on June 7 and 8 at the Pasadena Convention Center.
Geller said that Danielle and other children will “talk about being bullied for their food choices.” Danielle will share her strategies for coping with the illness.
Established in 1990, the Celiac Disease Foundation works to make certain that people are diagnosed and treated.
In addition to raising funds for research, the foundation works to educate the medical community, patients, and the retail and food industries about the illness, said Geller, whose son Henry Grunzweig had unexplained stomachaches and digestive problems throughout his childhood until he was diagnosed with celiac disease at 15.
“Many parents out there have children with issues, and doctors can’t figure it out,” Geller said.
Celiac disease can be difficult to diagnose because it affects people differently. It can begin at any age, and children have different symptoms than adults.
A blood test can detect celiac disease antibodies. If the test is positive, doctors should recommend an upper-endoscopy to take a biopsy of the small intestine, Geller said.
While some people have no symptoms, all individuals with celiac disease are at risk for long-term complications. If left untreated, the autoimmune disorder can cause diabetes, multiple sclerosis, dermatitis, anemia, osteoporosis and other illnesses.
“Celiac disease is a gateway disease,” Geller said. “Studies show that the longer you go without being diagnosed, the greater your risk of developing additional disorders.”
While gluten-free foods are expensive and difficult to find, the industry is making progress and offering more choices, Nebel said.
“It’s not only expensive, it’s the number of supermarkets I have to travel to,” she said.
In California, parents of students with celiac disease can file a special accommodation form to request gluten-free meals for their children. But Geller said the food provided is often contaminated by gluten.
For more about celiac disease, visit https://celiac.org.
This article was originally hosted on www.theacorn.com.