Partners and loved ones can find it very challenging to be responsible for the care of someone with a chronic disease. A recent study at Columbia University looked at just how stressful caregiving for a celiac disease patient can be.

Specifically, the study found that the more severe a patient’s symptoms, the more burden felt by the caregiver. Stress was also found to be higher when the caregiver was already dissatisfied in the relationship. Interestingly, the study found that longer relationships (greater than 10 years) usually revealed a higher stress or burden level. This may be because immediate issues (starting a gluten-free diet, managing symptoms) are of greater concern in shorter relationships, while longer-term partners begin to look at further ranging issues, such as quality of life and longevity. It is critical that healthcare providers involve caregiving partners in treatment and management planning decisions.

“Our findings illustrate that the diagnosis of celiac disease has ripple effects beyond the patient, and that the symptoms of celiac disease and the burden of treatment with the gluten-free diet can affect the patient’s closest relationship,” states Dr. Benjamin Lebwohl, CDF Research Committee member and one of the study’s authors. “This should be acknowledged by providers so as to bring this issue out in the open and make patients and their loved ones feel comfortable discussing the impact of celiac disease on all parties.”

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