What price peace of mind? It’s only 58c a week...

IT’S COELIAC Awareness Week... seven days devoted to ME! In the nearly six months since I was diagnosed I’ve detailed the highs and lows and sometimes unpleasant realities of this autoimmune disease.

Initially I thought that all I needed was Dr Google to figure out everything I needed to know. When that failed miserably, I joined the Coeliac Society of Ireland. I now rely on that little green Food List everyday. I met CEO Gráinne Denning to delve into the society’s inner workings.

If you haven’t joined, or let your membership lapse, maybe what she had to tell me will give you GF food for thought...

I wanted to address the issue of the €30 annual membership fee. Many people think it should be free for coeliacs to join?

‘I’d love it if it were free,’ Gráinne said. ‘But 80 per cent of the funds needed to run the society and print the Food List come from the membership fees, with 20 per cent coming from a service level agreement with the HSE. We’re grateful that the HSE grant has remained stable but the number of people approaching us is increasing all the time and the demands for our services are high.

‘Thirty euro per year works out at 58c per week, though we accept that probably comes at the end of a very expensive time. People have paid for tests, GP appointments, blood tests and maybe even hospital stays so we know it’s hard. I t hink members see that we have a website and a head office and assume that we’re in some expensive building with lots of staff. We’re not.’

I can attest to that. The rented office is a renovated doctors’ training hospital in Smithfield, Dublin — it’s careworn, to put it politely. The nearly 400-page Food List is printed at a discounted rate negotiated by a print broker who happens to be a coeliac. As Gráinne explains: ‘Administration costs are a bug bear for many and for me, too. I donate to several charities and you want to know that what you contribute is being used correctly. Since 2012 we’ve reduced our costs of producing both our newsletter and our food list.

‘We are trying to move to digital publications. However, to do that, we have to invest in our website, which was set up and run by a volunteer.

‘Our average wage is below the average industrial wage as per the census. We need professional staff to ensure the information that is given is correct.’ Those running the society aren’t kicking back on l eather sofas supping Nespressos and scoffing GF buns all day. Rather they’re achieving a lot with limited r esources. The food list manager liaises with hundreds of manufacturers to ensure the products are safe to eat and regularly tested.

Products drop off the list if this changes, meaning old l i sts aren’t just out- of- date — they’re potent i al l y harmful. Staff are also onhand to answer phone calls from coeliacs, their families, and anyone who has a question about the condition. They can help if you feel a product or a restaurant has let you down by conducting site visits to educate cooks on eliminating contamination.

And they’re there to listen if you’ve had it up to here with people telling you, ‘ Sure, a wee bit won’t hurt’. They take a positive attitude to a condition that can wear suffers down to our last shredded nerve. Behind the scenes, Gráinne is submitting Freedom of Information requests to discover just how the HSE approaches diagnosis and treatment, and she’s keeping the pressure on our politicians to recognise that coeliac disease is a financial as well as a physical burden.

If all that doesn’t convince you, think about this... in 1998 the Food List contained 114 pages, this year it has 370. With all that to choose from why take the risk? A world of safe f ood and a support network that understands every frustration you’re experiencing is waiting for you. And all for only 58c a week.

TO JOIN the Coeliac Society of Ireland telephone 01 872 1471 or email info@ coeliac.ie. Visit coeliac.ie for a list of events this week Read Dr Pixie on coeliac disease, symptoms and diagnosis, p13 of Good Health

Society staff aren’t in posh office suites supping on pricey coffees