We went to visit an old friend on the weekend. He’d be diagnosed with coeliac 12 months ago in his 50s and had been through lots of health complications (including being told to increase bran!) before finding out.
He’d been shocked, of course, then there’s all kinds of feelings:

Relief – to finally know what’s been causing your health (and sometimes mental health) issues.

but also…

Regret – all the years one has damaged oneself eating gluten products – wheat, rye, barley, oats (also spelt).

Anger – why the hell do these stupid companies add wheat starch and added gluten to every commercial product! (because it’s padding and they get it for next to nothing so they can penny-pinch on real contents).

Isolation – ‘What do you mean you’ve got nothing to eat, you’ve got those rice crackers you brought with you’ (as everyone else eats delicious home baked goods and dinners laid on for the guests).

Guilt – this gluten free stuff costs a fortune, am I really worth it?.

Melancholy – I remember those biscuits, here, just give me a sniff.

Identity crisis – what do you mean you don’t eat Tim Tams anymore, you always ate Tim Tams.

Worry – ‘what? we’re going out? three hours away? do they have anything for me to eat there? have we got some food to take? what? an apple? oh, yes, I forgot to bake my bread, I didn’t realise we were going to travel… there’s the aloneness – you sit eating your ‘special foods’ but you don’t feel special, you feel alone, because although you’re eating everyone else is ‘eating together’.

Fear – does that have gluten? can I look at the label? what do you mean you threw out the label? Well, is the chef here? Oh, you bought it in, aha, pre-packaged, aha, and you threw away the box, aha, so there’s no ingredients list, oh, OK.

Rejection – What’s that? Oh, I should try somewhere else. You leave with your tail between your legs and look up a street filled with bakeries, burger shops, and chicken bars selling coated chicken stuffed with stuffing. Maybe you make a political stand on behalf of all coeliacs (who aren’t there with you at the time) and leave looking strong but feeling one inch tall or you make a joke to try and keep your spirits up but they keep falling like a pair of pants without suspenders.

Alienation – ‘Mum, what’s this?’ ‘Oh, that’s just your father’s bread, you don’t have to eat it, there’s real bread over there’.

And you have so many wonderful friends and family members (if you’re lucky) who maybe try and get you something, even eat some of your ‘special foods’ declaring with surprise, ‘this isn’t bad! Really, you wouldn’t even know this was ‘special’ food’. and the comment is meant to feel good but it comes with a mixture of ‘well I wish they’d realise that out there in society and make life more accessible for this large minority with dietary disabilities’ or ‘thanks for the reassurance and for daring to try my ‘wierd food”.

1 in 250 people have coeliac disease. 1 in 160 people are on the autistic spectrum and around 80% of those with autism have been found in 15 year studies to be unable to digest gluten and casein (milk proteins). These people live with families, have friends who want to buy foods that make them feel at home, equal, ‘normal’ and to go to cafe’s and restaurants and community events and shop at the supermarket or catch a flight or stay at overnight accomodation WITH their son, daughter, husband, wife, friend. Often its not just the person with coeliac or gluten intolerance whose custom and patronage you lose when you fail to acknowledge their existance or needs. You often lose some degree of custom and patronage of their family, their friends. So it isn’t that minority of 1 in 250 you think isn’t worth worrying about, because when you add their friends and family who will now choose more of those venues, services, facilities and shops which will cater for those they love when they are with them. Each person with coeliac comes with around 2-8 significant others who care to make themselves disability friendly to someone with dietary disabilities. This is more like 1 in 30 people who will use your service less if you are blatantly ignoring the needs of their significant other. Its worth a thought.

… Donna Williams *)

Diagnosed with and managed for severe dairy allergy, gluten intolerance and salicylate intolerance.

http://www.donnawilliams.net/