Celiac disease, also known as gluten sensitive enteropathy, is no longer a rare diagnosis. Viewed as a “simple” food allergy, most physicians receive little education about celiac disease in medical school. Today, it is commonly diagnosed; however, symptoms are so varied and at times difficult to understand that on average there is an eleven year delay in diagnosis.
The exact cause of celiac disease is unknown, but there is evidence that the disorder is inherited since it tends to run in families. It may be caused by an abnormal immune response to proteins found in grains, particularly gluten and the related protein gliadin.
Normal digestion takes place in the small intestine, which is lined with finger-like projections called villi that help to increase surface area and enhance absorption of nutrients. Most people can eat food containing gluten with no trouble. But for those with celiac disease, eating gluten can cause a reaction in their bodies that damages or destroys the villi. When this occurs, the surface of the small intestine is flattened and a child's body can't absorb vitamins and nutrients from food.
Recognizing the Signs and Symptoms
In order to diagnose this common disorder in children, both parents and the child’s physician must be extremely watchful. Because symptoms in children are often subtle and mimic other intestinal diseases, like Irritable Bowel Syndrome or lactose intolerance, the disease is often difficult to diagnose. Some children experience symptoms the first time they are exposed to gluten, while others develop symptoms later in life.
Bloating, gas pain, and loose, frequent, non-bloody, non-mucousy stools occur during the illness. Children affected may exhibit failure to thrive, delayed weight gain, and growth retardation. Rather than just having an effect on digestion, celiac disease is additionally understood to be a systemic disease or one that affects the entire body. This means there may be neurological or psychiatric conditions, infectious tendencies, metabolic complications such as osteoporosis, bleeding tendencies, a higher incidence of malignancies, menstrual irregularities and general malnutrition. Some children develop skin rashes or act irritable or feel tired.
Diagnosis and Treatment
Simple blood testing is used as an initial screening tool to measure the level of antibodies to gluten and other proteins in the lining of the intestine. In order to confirm the diagnosis, children should be seen by a pediatric gastroenterologist and undergo a minimally invasive upper gastrointestinal endoscopy exam with a biopsy of the small intestine. During this procedure, a tissue sample is taken by inserting a long, thin tube called an endoscope through the mouth and stomach into the small intestine. A child is usually moderately sedated or put to sleep under anesthesia for the procedure. Since a life-long diet of gluten-free food is required for effective treatment and remission, a gastrointestinal specialist should review the biopsy result with a pathologist to exclude other conditions and confirm the diagnosis.
In celiac disease, food is the medicine – a complete removal of gluten from the diet is the key to controlling the disease and returning to health. Most patients feel better rather quickly when gluten is removed from the diet. Over a period of time on the gluten-free diet, the small intestine usually “heals” and the villi resume a more normal appearance and function.
Up until recently, when a physician recommended a gluten-free diet, parents had a difficult time finding gluten-free foods and resources. That has changed significantly. Now grocery stores, web sites and restaurants are abundantly supplied with information and gluten-free food that is nutritious and tasty. In fact, market research shows that the number of new products related to celiac disease jumped 86 percent in 2006. Today, children and adults with celiac disease live very full lives, enjoy great food, travel and eat in restaurants – the key is education and the ability to advocate for one’s self.
While a gluten-free diet is a definitive treatment for celiac disease, most children will find it very difficult to stay free of dietary gluten without help. Expert education and support must be available from your pediatrician and a dietitian. After that, support from family and friends is essential. Newly diagnosed children and teens should be urged to take responsibility for their food choices, learning how to read labels and advocate for themselves in restaurants and public settings. Strategies for birthday parties, holidays, summer camp and sleepovers need to be developed, as well as coping strategies for psychosocial concerns about feeling deprived or “different.” Families should consider reaching out to local support groups to share experiences and strategies, as well as to stay aware of new information and changes in product labeling. Most importantly, schools must accommodate gluten-free diets for government school lunch programs under Section 504 of the Americans with Disabilities Act.
From a financial and practical standpoint, gluten-free food is considered a reimbursable medical expense, to the extent that it exceeds the cost of comparable regular food and the threshold of 7.5 percent of adjusted gross income. Additionally, corporate flexible spending accounts can be used to pay for gluten-free food on a tax-preferred basis. Consult with your accountant and company human resources representative regarding these matters.
Parents whose children suffer from multiple gastrointestinal symptoms are urged to question their pediatrician about celiac disease and request appropriate testing. As awareness of the disease expands, fewer patients will suffer the long-term effects of the disease.
Glen R. Mogan, MD
Board certified gastroenterologist
On staff at Barnabas Health Ambulatory Care Center
Saint Barnabas Medical Center
The Kogan Celiac Center of Barnabas Health offers comprehensive testing and treatment for celiac disease for adults and children. The Center, located at the Barnabas Health Ambulatory Care Center, is dedicated to providing expert services that include early assessment and diagnosis, treatment, education and support to improve the health and well being of those who live with celiac disease. Individualized counseling and support services for patients and family members is invaluable to successful adherence to, and satisfaction with, a gluten-free diet.
For more information or an appointment, please call 973-322-7272.
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