Coeliac disease

Socialising as a coeliac

The tag line for this blog used to be something like “faith, food and photos”. Then Child 1 came along, blogging became more erratic, photography of anything other than children became even more erratic and I changed the tagline to something like “faith, food, family and photos”. As I am lurching slowly back into blogging, while also learning to deal with my relatively new reality of coeliac disease and our subsequent decision to make our family gluten-free at home, I find my mind turning back to that tagline. I like “faith, family, food” enough that I’ll keep it but a more real tagline, both for my life and this blog, would probably be “Christian, children, coeliac”. Many things define one’s life, sometimes temporarily, like a temporary change in health or a new job, and sometimes permanently, like my Christian faith.

For me, my coeliac diagnosis was a mind-boggling, life-altering diagnosis that permanently changed who I am, both in terms of how I see myself and how my social interactions may cause others to see me. Coeliac disease could be extremely socially isolating if I let it and sometimes that is tempting. Food that I make myself in my own kitchen in our gluten free house is food I can enjoy for the sake of the food itself and the company I am with. Food anywhere else is tinged with anxiety and fear. I’ll enjoy a coffee in a cafe but generally avoid eating out now as I hate cross questioning cafe staff to establish whether their gluten free food is actually coeliac safe and which might be the best or least risky menu options for a coeliac. It takes an enormous effort of trust to eat food others prepare for me and I find myself approaching meals with others away from home with high levels of anxiety and a good dose of stress as I wonder if they will have read labels as carefully as I would, whether the utensils used were properly cleaned, and whether they washed their hands properly between handling gluten-containing foods and foods I will be served. I fear complacency from individuals who say they are gluten free but follow a gluten free diet inconsistently. I hate my internal pre-social-event-with-food debate about whether I take my own food and draw unwanted attention to myself or whether I risk eating the gluten free food on offer which may be served right alongside gluten-containing foods and become contaminated enough to cause me a day’s vomiting from just a few falling crumbs as someone else serves themselves.

Food is a central part of our social lives and eating with others is a glue that brings and binds people together. When disease – physical or mental – of any kind interrupts the uninhibited enjoyment of food with others, it is like an invisible barrier is put around that person. They may be present and perhaps even outwardly participating but there is an internal barrier of fear or anxiety that keeps them on the outside – present but not fully participating, social but isolated – and often a little lonely.

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