I love it when coeliac disease gets media coverage.
Of course, of equal importance is that it’s accurately portrayed.
Thankfully, you can rely on the BBC to do this (unlike *coughs* The Daily Mail).
So I was pleased to be able to contribute on John Darvall’s programme last Monday, alongside a woman called Emma whose son had a severe peanut allergy and then grew out of it.
For anyone who missed it, click here and listen from 2:39:50 onwards.
For me, the most important things that were covered were:
Until you’ve lived through an experience yourself, it’s very easy to make an incorrect assumption about an allergy/ disease; It often takes time for the problem you have to be diagnosed. It may seem obvious in hindsight but you shouldn’t beat yourself up for not realising what the problem was earlier; and Education is key. Only by spreading awareness will people properly understand. I felt Emma made a very important point about other people’s judgement. If you have the same condition as someone else it doesn’t necessarily mean you’ll have the same reaction. It’s therefore of vital importance you don’t judge them for the way they deal with their food issue (whatever it might be – allergy, intolerance or disease).
Emma made the point that her son would get anaphylactic shock after eating nuts, which is clearly more serious than having a lesser reaction (such as a skin rash). Nobody would dispute that the latter’s unpleasant, but having to carry an EpiPen because of a life-threatening condition is another thing altogether.
So it’s of paramount importance we don’t patronise someone for handling things differently from the way we do. Mocking someone for how they handle their problem (especially when we think we suffer the same difficulty ourselves) is not only annoying but also extremely naive and unkind.
I’m often asked exactly “how bad” my coeliac disease is.
This is then qualified by the questioner informing me that some people are really sensitive and others are okay with a bit of gluten.
Excuse me while my eyes fix a hard stare. It’s true that people with coeliac disease may present different symptoms. That said, just because you can’t feel the damage gluten’s doing to you doesn’t mean you won’t suffer in the long run.
The opinionated but uninformed (often loud-mouthed) person is a breed to be feared.
Woe betide the good-natured person who then tries to give them accurate information about coeliac disease. The opinionated person will simply dig their heels in and insist they’re right (despite not having the disease themselves), leaving those in the know seething with anger.
So let’s clear up a few things once and for all.
My top 5 bug-bears (feel free to share these with anyone you feel needs to be informed)
Being Coeliac is not a choice. We are not on a gluten-free diet because we think it’s fashionable/ will help us lose weight. Cross-contamination is hugely distressing. If a crumb of gluten gets into our food then we might as well have eaten something that wasn’t gluten-free. Separate kitchen utensils, toasters & so on are mandatory. Better still, give us a separate kitchen. We do not sympathise with vegetarians or vegans in restaurants because ordering is awkward. We fully appreciate that everyone has choices and respect yours not to eat meat/ animal products. But don’t tell us you “know what it’s like”. An elected decision is very different from one that’s enforced. Packaged gluten-free food is rarely as good as its gluten-containing counterpart. We know this. But we don’t need to be reminded. Laughing at the bread we eat will just get you crossed off our Christmas card list. Telling us it’s not that bad. It’s not a competition. We haven’t set out to get more sympathy than people with illnesses that are worse. And until you have to go completely gluten-free for the rest of your life, you don’t have the right to make comments about how we should be dealing with it. But the good news is that coeliac disease is getting more coverage. With magazines dedicated entirely to gluten-free and celebrity chefs such as Phil Vickery regularly championing gluten-free food on national television, we’ll get the awareness we need.
And in the meantime, the more you can do to remain positive about the future, the better. How do you feel about being Coeliac? Do share your thoughts below!