Being diagnosed with coeliac disease can have a significant impact on one’s life, as Kirsten Robertson can attest. Six years ago, she was informed of her diagnosis, leading her to bid a bittersweet farewell to her favourite gluten-loaded foods. Since then, she has had to navigate a world that presents both practical and emotional challenges due to her dietary restrictions.
Coeliac disease affects approximately one in every nine people in Australia, and the impact of the diagnosis can be profound. The grief of not being able to enjoy beloved foods and the feeling of being left out in social situations where food is involved are common experiences among those with coeliac disease. The role of food in our culture is substantial, and the diagnosis often means a significant adjustment in one’s relationship with food.
For Kirsten, the diagnosis meant a significant shift in her approach to food. What was once a source of spontaneous joy has now become a practical affair. The bread falls apart, the pasta doesn’t taste as good, and it’s more expensive to buy gluten-free alternatives. This shift has also led to a sense of loss and a longing for the ability to eat anything without limitations.
The impact of a coeliac diagnosis on emotional wellbeing is a topic that Caroline Plumer, a psychotherapist at CPPC London, has observed. The loss of the ability to enjoy certain foods, the feeling of unfairness, and the adjustment to a new way of eating can lead to feelings of grief, normal in any type of loss. The sense of loss of control over one’s food choices and the feeling of being at odds with one’s own body are also common experiences.
The anxiety around food that often accompanies a coeliac diagnosis is something that Robertson and others have had to manage. The fear of accidentally ingesting gluten and the subsequent physical discomfort can be overwhelming. It can also lead to feelings of being left out in social situations and can cause stress and anxiety.
In addition to the emotional impact, the financial burden of eating a gluten-free diet also poses a challenge. In England, the availability of gluten-free food on prescription is limited, making it more costly for individuals with coeliac disease to maintain their dietary needs.
The gender disparity in coeliac disease, with a higher prevalence among women, further compounds the challenges faced by individuals with the condition. The hormonal changes that women experience may contribute to this imbalance, though the exact reasons are not fully understood.
Despite the challenges, individuals like Kirsten and Beth Tebboth, who was also diagnosed with coeliac disease, have found ways to navigate their new reality. They have sought support and have become advocates for themselves and others living with the condition. Finding community and understanding among fellow coeliacs has been an important source of comfort and resilience.
Living with coeliac disease is a journey that requires adjustments, support, and a new way of relating to food. It’s a journey defined by both the practical and emotional challenges of living with dietary restrictions in a society where food holds significant cultural and social importance. As awareness of coeliac disease grows, greater support and understanding can help individuals like Kirsten and Beth navigate this new normal with resilience and hope.