the patient celiac

Celiac Disease in Adolescents

0 comments April 11, 2017

I came across a disturbing statistic that only about 1/3 of teenagers with celiac disease actually comply with the gluten-free diet.  This led me to investigate what is known about celiac disease and adolescents.  I learned that there has not been much research in this area until recently, as the majority of studies of celiac disease have involved either adults (most) or young children.

In a recent study from Israel researchers compared over 7000 adolescents with celiac disease (mean age 17.1 yrs) to controls, a similar group of teens without celiac disease. They examined the rates of many diseases in youth with celiac compared to baseline.  Teenagers with celiac disease were found to have higher rates of all of the following:

  • Autoimmune diseases: Type 1 diabetes mellitus, inflammatory bowel disease, arthritis, thyroid disease, and psoriasis.
  • Non-autoimmune diseases: asthma, gallstones, migraines, anemia, and problems with menstrual cycles. This is the first time an association between celiac disease and menstrual abnormalities has been shown in this population.
  • Interestingly enough, teens with celiac disease were not at higher risk of bone fractures, liver disease, pancreatitis, or kidney stones.

Studies involving the mental health of adolescents with celiac disease have shown an increased risk of mood disorders, such as depression and anxiety, eating disorders, and behavioral problems such as ADHD.  It is postulated that the risk of psychiatric disorders is multifactorial, and may include some combination of chronic vitamin deficiencies, immune-mediated systemic (whole body) reactions, and the psychological effects of having celiac, such as feelings of social isolation, low self-esteem and being a burden to others.

Dr. Ludvigsson and a group of the world’s celiac disease experts, including Drs. Green and Hill from the U.S., published a consensus report about the transition from childhood to adulthood celiac disease in 2016. Highlights of their consensus paper include the following:
  • They recommend that the transition from parental management to self-management should occur gradually. The start of the transition to self-management should start between ages 14-15 and the actual transfer should take place at/around age 18.
  • Topics that need to be emphasized with teens during this transition period include the risk of developing complications despite not having any obvious symptoms, the psychological aspects of celiac disease, and the gluten-free diet.
  • This is a critical time period to confirm that the diagnosis of celiac disease was done correctly in the first place, as  there are some children with false positive diagnoses of celiac disease who do not actually have it. For example, a child who was diagnosed on the basis of only one slightly high TTG-IgA antibody level and no biopsy. The authors provide a framework for evaluating questionable celiac disease cases.

There are also many websites with practical advice about raising teens with celiac. Jackie Ourman, a well-known celiac blogger, gives parenting tips in this post from 2016, including the idea of using a “glutening” episode as a teaching opportunity for one’s teen. Another article for parents that I enjoyed from the magazine Gluten-Free Living was called “Help! My Gluten-Free Teen is About to Start Dating.”

In addition, the University of Chicago Celiac Disease Center is currently recruiting for a study about teenagers and celiac disease. The goal of the study is to better understand the emotions and coping skills of adolescent patients with celiac disease and the effect on their adherence to a gluten-free diet later in life. If you have a child between the ages of 12 and 18 he or she may qualify.  For more information contact Diane McKiernan at

Assa, A., Frenkel-Nir, Y., Tzur, D., et al. Large population study shows that adolescents with celiac disease have an increased risk of multiple autoimmune and nonautoimmune comorbidities. Acta Paediatrica. E-pub ahead of print. Downloaded April 10, 2017.

Ludvigsson JF, Agreus L, Ciacci C, et al. Transition from childhood to adulthood in coeliac disease: the Prague consensus report. Gut 2016;65:1242-1251.
Butwicka A, Lichtenstein P, Frisén L, Almqvist C, Larsson H, Ludvigsson JF. Celiac Disease Is Associated with Childhood Psychiatric Disorders: A Population-Based Study. Journal of Pediatrics. Published online March 7, 2017.

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