Celiac Caregivers Face Emotional Burden

Celiac Diagnosis

Celiac caregivers, or family members who care for celiac disease patients, face a big emotional burden. A survey of Swedish national health records found caregivers have an 11 percent greater risk for depression and 7 percent great risk for anxiety.

The study identified 29,096 celiac patients and 41,753 first-degree relatives in the registry. It focused mainly on 27,698 high-risk caregivers: parents of diagnosed children or spouses of people diagnosed during adulthood. The high-risk group was compared with 144,293 similar caregiving parents and spouses to people in the health registry who did not have celiac.

At its worst

The increased risk for anxiety and depression appeared mostly a few years before diagnosis and four to eight years after diagnosis. The authors speculate that the first spike may coincide with onset of symptoms and initial investigation to determine the problem, followed by the relief of having a diagnosis. The second spike may reflect concerns over related long-term health complications.

Previous studies have suggested celiac disease can impair the sex life of patients and their partners, based on interviews with smaller groups of patients. The national registry study could not collect any further information on that point. Also, it could not determine whether reduced symptoms or effective treatment on a gluten-free diet influenced the burden on family members.


However, it provides stronger evidence for a general burden on caregivers because it is based on a large population with a wide range of characteristics, such as household income.

Get everyone involved

The authors advise parents and spouses to take this into account and involve the whole family in supporting those with celiac disease. Researchers from the United States, United Kingdom, Sweden and Norway contributed to this study.

Ludvigsson JF, Roy A, Lebwohl B, Green PH and Emilsson L, “Anxiety and depression in caregivers of individuals with celiac disease—a population-based study,” Digestive and Liver Disease, Nov 16 2016, doi:10.1016/j.dld.2016.11.006 [Epub ahead of print].

Van Waffle has a bachelor’s of science degree in biology and lives in Waterloo, Ontario, Canada. He is research editor for Gluten-Free Living. He blogs about nature, gardening and local food at vanwaffle.com.

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