NASP Communiqué, Vol. 34, #8
Celiac Disease and Children:
Implications for Psychologists and Educators
By Jessica B. Edwards George, Jessica Blom-Hoffman, NCSP, &
Debra L. Franko
Celiac disease (CD) diagnoses are on the rise in the United States, affecting more and
more children in their daily eating routines both at home and at school. As such it is
important that psychologists and educators understand how to help children and their
families to manage health-related concerns while in school. This article describes CD,
the clinical manifestations, prevalence and incidence rates of CD in childhood, diagnosis
and treatment, barriers to treatment adherence, and how psychologists and educators
can best help children with CD while in school.
Overview of Celiac Disease
Celiac disease (CD), also known as celiac sprue, nontropical sprue, gluten-sensitive
enteropathy, and gluten intolerance, is a chronic, immune-mediated disease of the intestine,
triggered by the ingestion of gluten proteins in genetically susceptible individuals
(Cárdenas & Kelly, 2002). Gluten is a water-insoluble protein component of wheat and
other grains, such as rye and barley (Devlin, Andrews, & Beck, 2004). CD primarily is
characterized by chronic inflammation of the surface of the small intestine in response
to gluten. This inflammation is caused by an inappropriate response to gluten that activates
immune cells (T cells). The inflammation leads to intestinal injury with loss of
the intestinal villi, malabsorption of nutrients, and other clinical symptoms (Schuppan,
2000). Simply put, the body of an individual with CD turns against itself and attacks its
small intestine when gluten is ingested. The immune defense system of an individual
with CD is misguided and targets healthy, normal tissues, typically in the small intestine,
as if it were fighting an infection. CD is a chronic disease and can manifest at any
age following the introduction of gluten into an individual’s diet. The clinical manifestations
of CD are diverse due to the complex relationship between genetic, environmental,
and immunogenic factors (Cárdenas & Kelly, 2002).
Prevalence. CD was once considered a rare disease that affected mostly children of
Northern European ancestry and caused mainly gastrointestinal symptoms. However,
CD is now known to be common among people of all ages in many parts of the world.
Thus, CD is more prevalent than previously believed and more children with CD are in
school environments (Green & Jabri, 2003; Treem, 2004). A recent large prevalence study
conducted in the United States found the overall prevalence of CD in individuals without
evident risk factors to be 1 in 133 (Fasano et al., 2003). Although 1 in 133 individuals in
the United States are now believed to have CD, fewer than 5% of those with CD have been
diagnosed (Talley, Valdovinos, Petterson, Carpenter, & Melton, 1994).
Symptoms. The clinical presentation of CD in pediatric populations is diverse and
varies by child, contributing to difficulties in making an accurate diagnosis. CD has
been coined a “clinical chameleon” because of the wide range of symptoms that children
can manifest (Fasano, 2003). Children may present with “typical,” “atypical,” or “silent”
forms of CD (Catassi & Fasano, 2002). For an overview of the diverse clinical symptoms
of pediatric presentations of CD, see Table 1.
|Table 1. Clinical Spectrum of CD in Children (Catassi & Fasano,
• Presents in younger
• Fully expressed villous
• Chronic diarrhea
• Weight loss
• Stunted growth
• Abdominal distention
• Muscle wasting and
• Poor appetite
• Loss of fat and muscle
• Fully expressed villous
• Unusual intestinal
• Recurrent abdominal
• Anemia, Neurological
• Dental enamel defects
• Pubertal delay
• Short stature
• Fully expressed villous
• No, or low-level,
• Minimal complaints
• Typically diagnosed
• Abdominal cramping or
• Irritability, depression,
reactive and separation
anxiety, mania, and
• Menstrual abnormalities
later in life
• Muscle, joint, and/or bone
• Hair and/or vision loss
• Dermatitis herpetiformis
(a blistering skin disease)
• Oral aphthous ulceration
• Neurological complaints
• Memory loss
• Cerebellar ataxia
• Peripheral neuropathy
• Other behavioral problems
Diagnosis. A diagnosis of CD is usually made by testing an individual’s blood for
specific antibodies followed by biopsy of the small intestine to look for the characteristic
injury of CD. A second biopsy to confirm that the intestinal injury improves after the
individual is treated with a gluten-free diet (GFD) is confirmatory of the diagnosis, but
not always required (Cárdenas & Kelly, 2002).
Treatment: The gluten-free diet. The prescribed treatment for CD is to maintain
the gluten-free diet (GFD) for life to avoid damage to the intestinal villi, thus preventing
symptoms and some of the associated conditions and diseases. By following a diet that replaces
gluten-containing foods with GF nutrient-dense grains, seeds, legumes, and nuts,
children with CD can lead normal, healthy lives (Dennis & Case, 2004). For a partial list
of toxic and safe grains, starches, and flours when following the GFD, see Table 2. The
gluten status of food is not always apparent, as gluten is added to seemingly safe foods that
do not naturally contain it (e.g., candies, soy sauces, salad dressings, shredded cheeses,
toothpastes, mouthwash, prescription and non-prescription medications, and vitamins).
Educators, school nurses, and psychologists must be aware of the foods that children with
CD can and cannot eat; this best occurs by collaborating with the family to understand
the child’s diet and dietary restrictions. If one is unsure as to whether the child can have a
certain food, then the child’s pediatrician, nutritionist, or the family should be consulted.
Occasions when this can be an issue include classroom-based nutrition education activities
involving food tasting and classroom parties where food is served.
Issues in Treatment of Celiac Disease
Complications and consequences of untreated CD. Adherence to the GFD is important
because of the short-term and long-term complications and consequences. An
elevated frequency of intestinal T-cell lymphoma and an increased risk of other malignancies,
such as esophageal, throat, and non-Hodgkin’s lymphoma, have been found
in untreated individuals with CD (Corrao et al., 2001). There is also a strong association
between CD and other conditions/diseases, such as Type I diabetes, rheumatoid
arthritis, liver disease, Sjogren’s syndrome, Addison’s disease, congenital heart disease,
cystic fibrosis, thyroid disease, lupus, Down syndrome, Turner syndrome, and Williams
syndrome (Collin, Reunala, Pukkala, Laippala, Keyriläinen, & Pasternack, 1994). The
importance of early diagnosis and compliance with the GFD once a child is diagnosed
with CD is important for optimal health, as strict adherence to the GFD appears to reduce
risk for a subset of uncommon, but aggressive forms of malignancy and associated
disease and conditions.
Dietary compliance. Adhering to the GFD can be extremely challenging for individuals
with CD regardless of age. Rates of compliance in adolescent populations vary from
56% to 83% (Kumar et al., 1988; Mayer, Greco, & Troncone, 1991). Individuals diagnosed
with CD at a young age are reported to have the highest rates of compliance, while adolescents
have the most difficulty with adhering to the GFD (Pietzak, 2005). In addition,
females tend to be more compliant with the GFD than males (Ciacci et al., 2003).
Barriers to dietary compliance. Correctly following the GFD is not easy. Children
with CD may inadvertently or purposely ingest gluten for a number of reasons. In a
survey conducted by the Canadian Celiac Association with biopsy-confirmed adults and
children with CD, 45% of the adults surveyed indicated that they found the GFD to be
very difficult to moderately difficult to follow (Crannery, Zarkadas, Graham, & Switer,
2003; Rashid et al., 2003). One can only imagine how difficult it is for children to adhere
to the diet. Wheat and wheat-based food products are staples in North American diets.
An increasingly hectic lifestyle has contributed to a greater reliance on packaged convenience
foods and more meals eaten away from home. These convenience meals often
contain gluten, and thus, make navigating meal time more complex for individuals with
CD. Logistical problems (e.g., child does not have access to GF food at school, gluten is
added to otherwise “safe” foods in processing) and psychological barriers (e.g., child feels
deprived by not being able to ingest gluten containing products, such as birthday cake
or snack treats, child wants to eat what
other kids are eating) make adherence to
a GFD difficult.
Eighty-five percent of adults and 90%
of children surveyed by the Canadian Celiac
Association reported that just finding
GF foods was a major barrier in adhering
with the diet (Crannery et al., 2003). Another
serious challenge to maintaining
the GFD is unclear labeling. Eighty-five
percent of adults surveyed said that it is
a struggle to determine if foods are GF
(Crannery et al., 2003). Although gluten
is a common ingredient in many foods,
ingredient lists often make it difficult for
individuals to determine if a food product
is truly GF. School psychologists and educators
must be aware of the additional
burdens and stressors created when following
the GFD on both the family and
Traveling and eating in restaurants
and at social functions often prove to be
especially difficult for children attempting
to maintain the GFD. Difficulties adhering
to the GFD while traveling and at
restaurants appear not only to be logistical,
but also psychological, as children
report feeling different and embarrassed,
left out, and angry. These difficulties can cause a potential increase in dietary non-adherence in children (Rashid et al, 2003).
Low levels of knowledge regarding CD and the GFD in both the child and the child’s
family may also impair a child’s GFD adherence. Poor knowledge of the disease in parents
of children with CD correlates with less strict adherence to the diet in these children
(Jackson, Glasgow, & Thom, 1985). A positive relationship between knowledge about the
disease and socioeconomic status has been found (Ciacci et al., 1998). Thus, education
about the disease for both parents and children may increase GFD adherence, particularly
in lower socioeconomic families. The school psychologist can be helpful in assessing
the child and family’s knowledge base, providing educational materials, and suggesting
expert nutritional counseling as appropriate.
Co-morbidity in CD. Co-morbid psychological difficulties, such as reactive anxiety
and depression, are common in children and adults with CD (Addolorato et al., 2001;
Ciacci, Iavarone, Mazzacca, & DeRosa, 1998) and are further barriers to adherence with
the GFD (Pietzak, 2005). In a meta-analysis of the effect of depression and anxiety on
compliance with medical treatment, DiMatteo, Lepper, and Croghan (2000) found that
individuals with depression are three times more likely not to adhere to medical treatment
recommendations than patients without depression. Many children experience
psychological reactions to being placed on a restrictive diet (e.g., feeling deprived, angry,
anxious, or sad), which have been found to further complicate adherence. Children with
CD may also display increased irritability, separation anxiety from parents, emotional
withdrawal, and autistic-like behaviors (Pietzak, Catassi, Drago, Fornaroli, & Fasano,
2001). School psychologists and educators need to be aware of the affective components
of CD, carefully monitor children for depression, anxiety, and other behavioral presentations,
and make recommendations for support when appropriate.
Strategies to Support Students With Celiac Disease
|TABLE 2. Grains, Starches, and Flours (From Dennis & Case, 2004)
• Durum Flour
• Gluten, gluten flour
• Graham flour
• Malt, malt extract, malt flavoring
• Oats, oat bran, oat syrup
• Semolina (durum wheat)
• Wheat, Wheat germ, wheat starch,
wheat bran, any word with wheat in its
• Bean flours (garfava, pinto, navy,
• Corn (maize)
• Indian rice grass
• Legume flours (garbanzo/ chickpea,
• Nut flours (almond, hazelnut, pecan)
• Rice - brown, white, wild, Basmati, etc
• Rice bran
• Potato starch, potato flour, sweet
• Seed flours (sesame)
• Soy (soya)
• Tapioca (also called cassava or manioc)
• Teff (tef)
Be supportive and understanding of the difficulty associated with adhering to
the GFD. Children on a GFD need to learn how to cope with being surrounded by others
eating foods that they cannot eat. As such, children need to be able to discuss their feelings
associated with this restriction. Give the child with CD the opportunity to discuss
their dietary restrictions with their classmates and teachers if they are comfortable doing
so. Assisting and supporting children in expressing their emotions regarding their diet
and disease by reinforcing that it is normal to feel upset, angry, and/or sad is important.
School should be an environment where unpleasant emotions can be expressed and coping
strategies can be learned.
Support the adults. Have an open and honest relationship with the family of a child
with CD. The child and the family are typically the best resource in providing information
on CD and the GFD and in ensuring the safety and happiness of the child while in
school. Be sensitive to the fact that raising (and educating) children can be exhausting
and this can be heightened for those raising (and educating) a child with severe dietary
restrictions. Adults often need to talk about their frustrations and feelings regarding
their role in helping a child with CD, whether it is a parent, psychologist, or educator.
Be a liaison between CD students and families and school food services. Educators
and school psychologists can assist parents and children with communicating
their dietary needs to school food services. This is especially important for children who
participate in free breakfast and lunch programs as they may not have access to GF foods
to bring into school for their meals or doing so may produce undue financial hardship
on the family.
Allow access to GF alternatives in the classroom at special events and holidays.
It can be heartbreaking for a child to be unable to eat gluten-containing treats at
special occasions, such as birthdays or holidays. Allowing access to GF alternatives for all children in the classroom at special events and holidays, not just for the child with CD,
may alleviate feelings of being different. New GF foods are truly tasty and other children
may also enjoy them.
The following resources are recommended for more information about CD:
Case, Shelley (March 2006). Gluten-Free Diet: A comprehensive resource guide (Expanded
Edition). Regina, Saskatchewan: Case Nutrition Consulting.
Cel-Kids of Celiac Sprue Association (CSA/USA)
Provides support, special events, and summer camps to children with CD and their
families. For a chapter near you go to www.csaceliacs.org or call (877) CSA4CSA
Celiac Listserv — Cel Kids New Group
A listserv specifically for children with CD. To subscribe: Send e-mail to List-serve@
maelstrom.stjohns.edu with “subscribe cel-kids” in subject heading from the email
address that you want the listserv emails sent to.
A support group out of Seattle, WA that provides special events, such as an annual
summer camp, for children with CD and their families. For more information go to
www.gluten.net or call (206) 245-6652
Korn, D. (2001). Kids with Celiac Disease: A family guide to raising happy, healthy, gluten-
free children. Brentwood, MD: Woodbine House.
Lowell, J.P. (2004). No more cupcakes and tummy aches: A story for parents and their
celiac children to share. Philadelphia, PA: Xlibris Corporation.
Raising Our Celiac Kids (R.O.C.K.)
Provides support and special events for children with CD and their families. For more information
about groups in your area go to www.celiackids.com or call (858) 395-5421
Addolorato, G., Capristo, E., Ghittoni, G., Valeri, C., Mascianà, R., Ancona, C. et al. (2001).
Anxiety but not depression decreases in celiac patients after one-year gluten-free
diet: A longitudinal study. Scandinavian Journal of Gastroenterology, 5, 502-506.
Cárdenas, A. & Kelly, C. (2002). Celiac Spruce. Seminars in Gastrointestinal Disease, 13,
Catassi, C. & Fasano, A. (2002). New developments in childhood celiac disease. Current
Gastroenterology Reports, 4, 238-243.
Ciacci, C., D’Agate, C., DeRosa, A., Franzese, C., Errichiello, S., Gasperi, V. et al. (2003). Selfrated
quality of life in celiac disease. Digestive Diseases and Sciences, 48, 2216-2220.
Ciacci, C., Iavarone, A., Mazzacca, G., & DeRosa, A. (1998). Depressive symptoms in adult
coeliac disease. Scandinavian Journal of Gastroenterology, 33, 247-250.
Collin, P., Reunala, T., Pukkala, E., Laippala, P., Keyriläinen, O., & Pasternack, A. (1994).
Coeliac disease — Associated disorders and survival. Gut, 35, 1215-1218.
Corrao, G., Corazza, G., Bagnardi, V., Brusco, G., Ciacci, C., Cottone, M. et al. (2001).
Mortality in patients with celiac disease and their relatives: A cohort study. Lancet,
Crannery, A., Zarkadas, M., Graham, I., & Switer, C. (2003). The Canadian celiac health
survey—The Ottawa chapter pilot. BMC Gastroenterology, 3, 8-13.
Dennis, M. & Case, S. (2004). Going gluten-free: A primer for clinicians. Practical Gastroenterology,
Devlin, S., Andrews, C., & Beck, P. (2004). Celiac Disease: CME update for family physicians.
Canadian Family Physician, 50, 719-725.
DiMatteo, R., Lepper, H., & Croghan, T. (2000). Depression is a risk factor for noncompliance
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Fasano, A. (2003). Celiac disease—How to handle a clinical chameleon. New England
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Fasano, A., Berti, I., Gerarduzzi, T, Not, T., Colletti, R., Dargo, S. et al. (2003). Prevalence
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Green, P.H. & Jabri, B. (2003). Coeliac disease, Lancet, 362, 383-39.
Jackson, P., Glasgow, J., & Thom, R. (1985). Parents’ understanding of celiac disease and
diet. Archives of Disease in Childhood, 60, 672-674.
Kumar, P., Walker-Smith, J., Milla, P., Harris, G., Colyer, J., Halliday, R. et al. (1988). The
teenage celiac: Follow-up study of 102 patients. Archives of Disease in Childhood,
Mayer, M., Greco, L., & Troncone, R. (1991). Compliance of adolescents with celiac disease
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Pietzak, M., Catassi, C., Drago, S., Fornaroli, F., & Fasano, A. (2001). Celiac disease: Going
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Rashid, M., Crannery, A., Graham, I., Zarkardas, M., Switer, C., Case, S. et al. (2003).
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Talley, N., Valdovinos, M., Petterson, T., Carpenter, H., & Melton L.. (1994). Epidemiology
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© 2006, National Association of School Psychologists. Jessica B. Edwards George, is
a doctoral candidate at Northeastern University and intern at The Celiac Center, Beth
Israel Deaconess Medical Center, Boston, MA; Jessica Blom-Hoffman, PhD, NCSP, and
Debra L. Franko, PhD, are on the faculty of Northeastern University.
Author Note: Ciarán P. Kelly, MD, Medical Director of The Celiac Center, Beth Israel
Deaconess Medical Center, Boston, MA and Associate Professor of Medicine at Harvard
Medical School, Boston, MA reviewed this article for medical accuracy.