”It’s just coeliac disease. Why worry?”
This is what I was told by my gastroenterologist this morning at my follow up visit when I asked about whether I can test if my daughter has the coeliac gene.
We have all heard dismissive comments about coeliac disease from friends, colleagues and even family members. I have been told that a little bit of gluten will not kill me by a restaurant owner. I have been labelled a fussy eater by others. But to be told that I should not worry about coeliac disease by a consultant gastroenterologist is infuriating and disappointing.
I wanted to give the dear doctor an earful about the difficulties we face on a daily basis. I wanted to explain how frustrating it can be when people pass our diet off as a fad or trend. I wanted to let him know about the worries we face when dining out, the planning involved in going on holiday, or the constant need to scrutinise labels and watch out for cross contamination. He should know that we agonise about associated auto-immune conditions, consequences of late diagnosis, and the severe health consequences if we are not careful with what we eat.
I wanted to tell him that I worry a little every day.
But all that came out of my mouth was:
”she is just a child. It is harder for children”.
I do not know why I felt the need to control my emotions. After all, his remark was unnecessary and insensitive.
These comments are not helped by the fact that some people follow the gluten free diet to lose weight or eat healthier, but then forget their special diet when the situation is not ideal.
A while ago, I posted the below ecard on my facebook page http://www.facebook.com/thecoeliachub.
Attitudes like this dismiss the severity of coeliac disease and turn it into a joke. Some might find it funny, but I do not. It all boils down to lack of information and awareness about our condition.
Have you ever been told anything that makes you seem fussy or that makes light of coeliac disease?