As many autoimmune disorders and chronic illnesses in general, Coeliac Disease comes in many forms and shapes. Having struggled to find those living with the disease who are physically or emotionally challenged by it every day, I like to stress we exist!
When I have a conversation about Coeliac Disease it often goes like this:
Person: So you do not eat anything from the buffet/ the kitchen etc.?
Me: No, I have a chronic illness and I am on a medical diet. (I try to avoid speaking about Coeliac Disease in small talk conversations as I feel that I educate around 85% of those around me about what Coeliac Disease really is and small talk is not the place to do that.)
If the person pushes me to tell them the name of my disease and I am up for it I say: I have Coeliac Disease with severe symptoms.
After that part the conversation can go many ways. Some people just leave it there, others tell me that it ‘sucks’, some understand but the majority says something like: is that not ‘just’ a gluten intolerance?
It is not just about the protein gluten
Of course, we cannot digest gluten and that is a big part of the disease but that is not everything. It is also extremely limiting for those of us who have biopsies that come back with the worst or second worst criteria. When facing malabsorption, underweight and keeping any food insight the stomach for years, it takes its toll on the body. And being reminded by the fact that everything is fine as long as gluten is cut out of the diet does not touch this side of the story at all.
There are those with Coeliac Disease who magically feel better after their diagnosis, those who are asymptomatic and those who say they can manage their symptoms easily. I think it goes without saying that I am glad that not everyone has to suffer painfully through this disease and I wish I had a similar experience. I also recognise that the voices of those with these experiences are equally important. But I am trying to highlight that life with the misconceptions around Coeliac Disease is already hard on everyone but by only focusing on the easy or success stories, we silence a group of people who live a different life with Coeliac Disease. Even worse we open the door that they question their sanity. To change societal understanding of Coeliac Disease, all experiences of the disease matter.