Populations
Skip Navigation LinksNASP Home Publications Communiqué Volume 34, Issue 8 Celiac Disease and Children

NASP Communiqué, Vol. 34, #8
June 2006

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, 2002)
Symptoms and Presentation
Typical
• Presents in younger children
• Fully expressed villous atrophy
• Chronic diarrhea
• Weight loss
• Stunted growth
• Abdominal distention
• Muscle wasting and
hypotonia
• Poor appetite
• Malnutrition
• Loss of fat and muscle stores
• Irritability
Atypical
• Fully expressed villous atrophy
• Unusual intestinal complaints
• Recurrent abdominal pain
• Vomiting
• Nausea
• Constipation
• Non-digestive manifestations
• Anemia, Neurological symptoms
• Osteoporosis
• Dental enamel defects
• Pubertal delay
• Short stature
Silent
• Fully expressed villous atrophy
• No, or low-level, symptoms
• Minimal complaints
• Typically diagnosed through screening programs
Other
• Abdominal cramping or discomfort
• Bloating
• Anorexia
• Fatigue
• Irritability, depression, reactive and separation anxiety, mania, and autistic-like behaviors
• Menstrual abnormalities later in life
• Muscle, joint, and/or bone pain
• Hair and/or vision loss
• Dermatitis herpetiformis (a blistering skin disease)
• Oral aphthous ulceration (canker sores)
• Neurological complaints
• Confusion
• Memory loss
• Cerebellar ataxia
• Epilepsy
• 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 the child.

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)
Toxic Safe
• Barley
• Bran
• Bulgur
• Couscous
• Durum Flour
• Einkorn
• Emmer
• Farina
• Farro
• Gluten, gluten flour
• Graham flour
• Kamut
• Malt, malt extract, malt flavoring
• Oats, oat bran, oat syrup
• Orzo
• Rye
• Semolina (durum wheat)
• Spelt
• Triticale
• Wheat, Wheat germ, wheat starch, wheat bran, any word with wheat in its name
• Arrowroot
• Amaranth
• Bean flours (garfava, pinto, navy, romano,)
• Buckwheat
• Flax
• Corn (maize)
• Indian rice grass
• Legume flours (garbanzo/ chickpea, lentil, pea)
• Millet
• Nut flours (almond, hazelnut, pecan)
• Quinoa
• Rice - brown, white, wild, Basmati, etc
• Rice bran
• Potato starch, potato flour, sweet potato flour
• Sago
• Seed flours (sesame)
• Sorghum
• 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.

Recommended Resources

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.

Gluten-Intolerance Group

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

References

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, 232-244.

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, 358, 356-361.

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, 28, 86-104.

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 with medical treatment: Meta-analysis of the effects of anxiety and depression on patient adherence. Archives of Internal Medicine, 160, 2101-2107.

Fasano, A. (2003). Celiac disease—How to handle a clinical chameleon. New England Journal of Medicine, 348, 2568-2570.

Fasano, A., Berti, I., Gerarduzzi, T, Not, T., Colletti, R., Dargo, S. et al. (2003). Prevalence of celiac disease in at-risk groups in the United States. Archives of Internal Medicine, 163, 286-292.

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, 63, 916-920.

Mayer, M., Greco, L., & Troncone, R. (1991). Compliance of adolescents with celiac disease with a gluten-free diet. Gut, 32, 881-885.

Pietzak, M. (2005). Follow-up of patients with celiac disease: Achieving compliance with treatment. Gastroenterology, 128, S135-S141

Pietzak, M., Catassi, C., Drago, S., Fornaroli, F., & Fasano, A. (2001). Celiac disease: Going against the grains. Nutrition in Clinical Practice, 16, 335-344.

Rashid, M., Crannery, A., Graham, I., Zarkardas, M., Switer, C., Case, S. et al. (2003). Canadian celiac health survey: Pediatric data. Journal of Pediatric Gastroenterology and Nutrition, 37, A127.

Schuppan, D. (2000). Current concepts of celiac disease pathogenesis. Gastroenterology, 119, 234-242.

Talley, N., Valdovinos, M., Petterson, T., Carpenter, H., & Melton L.. (1994). Epidemiology of celiac sprue: A community-based study. American Journal of Gastroenterology, 89, 843-846.

Treem, W. (2004). Emerging concepts in celiac disease. Current Opinion in Pediatrics, 16, 552-559.

© 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.