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
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
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
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
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.
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,
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