This dangerous reaction to food containing gluten goes 97% undetected and is often misdiagnosed.
by Susan Stopper
Grocery shopping and preparing meals are ordinary tasks for most parents, but for Cherry Hill, NJ mother Donna Bell these chores can be a real challenge.
Her five-year old daughter, Evey has celiac disease, a condition in which the immune system responds abnormally when gluten, a protein, found in wheat, barley, and rye, is consumed. The treatment a lifelong gluten-free diet can be hard because so many foods contain gluten, but the bigger difficulty is often identifying the disease in the first place.
According to the National Foundation for Celiac Awareness, 97 percent of people with celiac disease don’t know they have it. The symptoms are often mistaken for those of irritable bowel syndrome, lactose intolerance, intestinal infections, Crohn’s disease, ulcerative colitis and eve depression.
Bell’s daughter was misdiagnosed several times, and it wasn’t until she was tested for celiac disease that Bell herself, who suffered from unexplained anemia for years, was also tested and found that she had celiac disease as well.
Symptoms can also be so mild they go unnoticed, but identifying the disease is crucial. Celiac disease damages the lining of the small intestine, preventing absorption of essential nutrients. Left untreated, it can lead to malnourishment, osteoporosis, cancer, seizures, reproductive health issues, thyroid disease and other autoimmune diseases.
Approximately one in 133 Americans has celiac disease. Many others suffer from gluten intolerance, a condition in which people experience many of the same symptoms of celiac disease when they consume gluten, but have not incurred intestinal damage, explains Ritu Verma, MD, section chief of gastroenterology at The Children’s Hospital of Philadelphia.
While both celiac disease and gluten intolerance are sometimes referred to as gluten sensitivity, Verma explains it is important to determine which condition a person has. Someone with gluten intolerance may be able to consume some gluten, while a person with celiac disease must avoid all gluten, even if his symptoms aren’t severe, because of the serious damage it causes.
Detecting a Problem
Symptoms of celiac disease and gluten intolerance can become apparent as early as infancy when cereals that contain wheat, rye and barley are introduced into the diet or they may not appear until later. According to Dr. Verma, the most common symptoms of celiac disease in
children can include:
Doritos Cool Ranch Tortilla Chips
General Mills Rice Chex
Lay’s Classic Potato Chips
many varieties of ice cream
Orville Redenbacher Microwave Popcorn
Post Cocoa and Fruity Pebbles
Snickers candy bars
Other symptoms include:
• Bloating or gas
• Joint pain
• Leg pain
• Pale mouth sores
• Tingling or numbness
• Tooth discoloration or loss of enamel
• Unexplained anemia
Individuals with gluten intolerance often display the gastrointestinal symptoms of celiac disease, though they may not be chronic or severe, explains Prateek Wali, MD, gastroenterologist at Alfred I. duPont Hospital for Children in Delaware.
When To Act
Dr. Verma says talk to your child’s pediatrician or medical caregiver about testing for celiac disease if:
• Your child is exhibiting symptoms.
• Your child has been diagnosed with another condition similar to celiac disease and is not improving from treatment (for instance, a child diagnosed with lactose intolerance who isn’t improving from the elimination of lactose from his diet).
• Another family member has been diagnosed with celiac disease.
Blood tests and a biopsy of the small intestine are used to test for celiac disease. Dr. Verma explains that it is important to eat a normal diet including gluten before the blood tests to get accurate results.
If a person tests negative for celiac disease, he should also be tested for food allergies, explains Dr. Verma. If celiac disease and food allergies have been ruled out, a diagnosis of gluten intolerance is usually made.
The Center for Celiac Disease at The Children’s Hospital of Philadelphia, Phila., 215-590-1000, www.chop.edu (search: celiac disease)
Celiac Disease Foundation (website offers a quick start diet guide for celiac disease), 818-990-2354, www.celiac.org (click: diet and lifestyle).
Gluten Free Registry (list of restaurants with gluten-free options, searchable by state), www.glutenfreeregistry.com
National Foundation for Celiac Awareness, Ambler, PA, 215-325-1306, www.celiaccentral.org
National Institutes of Health Celiac Awareness Campaign,800-891-5389, www.celiac.nih.gov
R.O.C.K. (Raising Our Celiac Kids), www.celiackids.com
While individuals with gluten intolerance can often just avoid certain foods, those with celiac disease must cut gluten out of their diets entirely. If your child receives that diagnosis, consult with your pediatrician, who might refer you to a dietician for guidance on meal planning and reading food labels.
The adjustment can be difficult. For the child, it means avoiding all food made with wheat, rye, or barley, which includes not only most bread, pasta, cereal, and baked goods, but also many processed foods where gluten often hides in the additives, foods such as sauces, soups, cold cuts, chips and candy.
Dr. Verma, who has two children with celiac disease, recommends changing one meal at a time. “It’s very easy to convert dinner to gluten-free,” she says. Plain meat, potatoes, and vegetables are naturally gluten-free.
Other foods that usually contain gluten, like bread and pizza, now come in gluten-free varieties, available at both health food stores and many regular grocery markets. ShopRite, Trader Joe’s, Wegmans and Whole Foods list gluten-free items on their websites. (Also see Eat Beat, p. 13.)
While all products containing wheat must be labeled, barley and rye are not included in this requirement. Most experts also agree that oats should be avoided unless the package specifically states the product is gluten-free.
Gluten-free products tend to be more expensive. Dr. Verma explains that you can have foods with gluten in the house for other family members as long as you wash hands, utensils and cookware that come in contact with gluten before preparing gluten-free meals.
“You always have to prepare,” says Bell. “Sometimes it’s calling ahead to a restaurant to make sure there will be something there for us to eat. Other times it’s packing gluten-free pizza and a cupcake for a birthday party so your child can have the same treats as everyone else.”
“Gluten-free food is medication,” says Dr. Verma. She observes that it’s rare to have a condition in which changing your lifestyle can completely eliminate symptoms and even reverse damage to your body, so it’s not a terrible disease to have. “Focus on all the things your child can have, not on being deprived,” she advises.
Susan Stopper is a local freelance writer.