Celiac Disease in Children


If your child is complaining of stomachaches, having too many or too little bowel movements or isn’t gaining weight, consider testing for celiac disease. An autoimmune disorder, celiac disease is relatively common, with an estimated three million Americans having it, according to Dr. Peter Green of the Celiac Disease Center within the Department of Medicine at Columbia University and co-author of the book Celiac Disease: A Hidden Epidemic (Collins, 2006).

Despite the fact that more people have celiac disease than Alzheimer’s or multiple sclerosis, a shocking 97 percent of cases are undiagnosed, says Dr. Green. The average length of time before diagnosis is 11 years.

Finding Out
“I was lucky; my daughter’s diagnosis was fortuitous,” says the author, Lisa A. Goldstein, from Pittsburgh, Pa. “When my mother-in-law was diagnosed – and only after telling her doctor to run the specific test – her children and their children were tested. The last thing I expected was for my daughter to have it, yet in retrospect, the signs were there. She was already scheduled for a weight check due to concerns about her lack of weight gain.”

What Is Celiac Disease?

Celiac disease, also known as celiac sprue, is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food. People who have celiac can’t tolerate a protein called gluten, which is found in wheat, rye and barley. It can be hidden in many other ingredients such as maltodextrin or even in natural and artificial flavors. The intolerance to gluten is commonly referred to as a food allergy when in fact gluten acts as a poison to the system.

There is a wide range of symptoms, but people also can be asymptomatic. “Children seem more likely to present with ‘classic’ symptoms of celiac disease: tummy aches, lactose intolerance, constipation, short stature, failure to thrive, lack of ability to concentrate and learning difficulties,” says Alice Bast, executive director of the National Foundation for Celiac Awareness.

The Diagnostic Process

The first step in the diagnostic process is testing the blood for specific antibodies. If tests and symptoms suggest celiac disease, Dr. Green says, the next step is removing a tiny piece of tissue from the small intestine to check for damage to the villi – small finger-like projections that are important for nutrient digestion and absorption. A long, thin tube called an endoscope is eased through the mouth and stomach into the small intestine to take a tissue sample.

The good news is that treatment doesn’t involve medication, nor does it affect the duration of life. For most people, avoiding foods with gluten will result in improvements quickly. However, this diet is lifelong. “Eating any gluten, no matter how small an amount, can damage the intestine,” Dr. Green says. “This is true for anyone with the disease, including people who do not have noticeable symptoms.”

Dealing with the Disease

The diet does mean a drastic lifestyle change. Foods with gluten in them include most grains, pasta, cereal and many processed foods. “Despite these restrictions, people with celiac disease can eat a well-balanced diet with a variety of foods,” Dr. Green says. Many regular supermarkets and smaller health food stores carry gluten-free (GF) products. There are many sites online that carry these products, and more products are available every day. New food labeling laws that went into effect in January 2006 are now making shopping easier because gluten is more readily identified.

An advantage to being diagnosed young is that your child will soon forget the taste of food with gluten, as opposed to a teenager or adult with years of taste-bud exposure.

Eating Gluten Free
“At first, I despaired that my daughter wouldn’t survive without her beloved mac-n-cheese, but there’s a GF option,” Goldstein says. “Other food alternatives exist.”

Because the disease is hereditary, family members of people who have been diagnosed should be tested for the disease, Dr. Green says. “About 10 percent of an affected person’s first-degree relatives (parents, siblings, children) will also have the disease,” he says. “The longer a person goes undiagnosed and untreated, the greater the chance of developing malnutrition and other complications.” Untreated people can incur a higher risk of additional autoimmune disorders, neurological problems, osteoporosis and even cancer.

One issue for people who have celiac is cross-contamination. This is when gluten-free food comes into contact with food containing gluten – even in very small amounts. “If you put peanut butter on a piece of bread and then get more peanut butter, inevitably a few crumbs drop in the jar,” Bast says. “Those crumbs could cause someone with celiac to get sick when they use the same jar.” A young child’s life has many food-related events: school parties, friends’ birthdays, eating in the school cafeteria, eating out or ordering takeout, Bast says. “Besides the details of how to cook, [you must] buy and bring GF food for all of these occasions,” she says. “The emotional aspect for a child is difficult.”

A diagnosis can be overwhelming, but attitude sets the tone for how a child will handle his disease and diet. The philosophy recommended by experts is echoed by Jamie Yadgaroff of Penn Valley, Pa., whose son was diagnosed at age 3. “I try to make being gluten free a positive and special thing for my child, not a burden or a negative,” she says. “I did not make my entire household gluten free because I felt that my son needed to learn that his diet is different. I didn’t want to create a fantasy world at home. However, I created a few shelves in my pantry that he could reach that contain all gluten-free foods.”

Bast agrees with this outlook. “Kids are lucky in that all they have to do is change their diet,” she says. “Positive attitudes elicit positive results … Remember that celiac children on a gluten-free diet live happy, healthy lives!”

Tips for the Newly Diagnosed

If your child is newly diagnosed, Alice Bast, executive director of the National Foundation for Celiac Awareness, recommends a support system for both you and your child. “Find other parents who have a child with celiac, join a support group, get a buddy,” Bast says. “Network with other parents who can help guide you through your issues.”

Find a buddy for your child, too. “Let the child see that other children have celiac and are having a good time,” Bast says.

A couple of books will also help you and your family as you embark on this new journey. Try Danna Korn’s Kids with Celiac Disease (Woodbine House, 2001) for you and Eating Gluten-Free with Emily (Woodbine House, 2004) by Bonnie J. Kruszka for young children.


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