Emma Clarke Conway looks back at 50 years of the Coeliac Society of Ireland improving the lives of tens of thousands of people with coeliac disease
When lifelong coeliacs get together, there’s a little competitive edge to see who is longest diagnosed. I sometimes win – 44 years. But I’ve met those who go further back, some far enough to recall coeliac children being called ‘Banana Babies’ during the war, when that’s all there was for them to eat.
Of course, bananas being gluten-free is obvious now, but it wasn’t many years ago. And that’s why we have the Society we have today.
Many people refer to the Society as CSI. While not to be confused with Crime Scene Investigation, many coeliacs consider themselves prime investigators when it comes to finding gluten-free food. You sort of have to be. It helps to have a fantastic support organisation that grew from kitchen tables into the vibrant charity that it is today.
In the 1960s, societies were being set up in the UK and all over Europe to provide information on the little known condition called coeliac disease. In Ireland, a group of coeliacs, medical professionals and parents of coeliacs came together to start the Coeliac Society of Ireland in 1970.
I received my official coeliac diagnosis in 1976. At nine months olds, I weighed only 9lbs, spending nearly six months of infancy in Cherry Orchard hospital and throwing up rings around me. This probably sounds familiar to parents of coeliac kids. In hospital, I would thrive on 7Up, then get sick as soon as they gave me food again. An accidental conversation with a relative studying medicine, led to a jejunal biopsy. I was promptly put on the diet and thrived. So began my coeliac life, officially, aged 2 and 2 months.
Hospital dietitians sagely advised my parents to join the Coeliac Society and every year at my check-up in Temple Street, we were advised to ensure we went by the book – the List of Gluten-Free Manufactured Products. Back then it was a thin booklet, black and white and simply laid out. It was put together by volunteers, Anne Manning, being one, herself a parent of a coeliac child.
As a child, I remember Christmas parties by the Society’s volunteers; tables groaning under the weight of gluten-free cakes and biscuits and other treats. Somewhere for children to be themselves and not just the kid who couldn’t eat cake. At one childhood party all they had for me was banana and ham! A big difference now, when children can so easily be provided for with a little forethought.
Initially, the Coeliac Society had no funding, so the volunteers operated a postal address in Clyde Road in Dublin, to provide support to newly diagnosed coeliacs. The first List of Gluten Free Manufactured Products – known today as the Food List – was produced in 1977. Sixty companies submitted products for the first edition. Admirable, if you consider how much less processed foods would have been available then. The book was distributed by local Branch Secretaries, from their homes, long before the era of an office or even email. Proceeds from the sale of the book then funded Society activities. In 1988 the Coeliac Society obtained charitable status.
The husband of a member, Liam Clare (whose wife Carmel was a long-term committee member of the Eastern Branch of the Society), was pivotal in the opening of Carmichael Centre, following much lobbying in the late 80s. In November 1990, Carmichael Centre official opened and the Society moved into its first dedicated office space. Volunteer Ann Boland became a part-time paid employee in 1991 and continued working part-time (more often going far above and beyond her daily hours) for many years until she retired in 2007.
Ann was the kind and understanding voice at the other end of the phone for those who rang up, wondering ‘what can I eat!’ Her son was coeliac since infancy and she was well versed in those early days of figuring out the pitfalls and also recognising when someone needed some guidance towards investigation for coeliac disease. Calls were varied, there was a great deal of admin and also the yearly membership fee to be processed, without email, or credit card and Ann took care of that along with a very dedicated Management Committee.
Anne Manning, meanwhile, was employed part-time to continue her work on the Food List, often taking calls and dealing with queries outside hours and ensuring that no stone was left unturned where gluten-free was concerned. I often recall an email from her, with news that a brand of marshmallows had been added to the list – since we were lacking a marshmallow.
Anne would comb supermarkets for new products and she often provided support directly to new manufacturers, as well as those members who were struggling. She developed the Catering List, seeing a gap in the market for quality information on products and staff training for the hospitality industry. She created Gluten-Free All-Sorts, the Society’s cookbook, and at the launch (during one of our conferences) Anne brought many of the dishes for members to sample, that she made herself. She was a fantastic cook and mother to a large family on top of her dedication to the Society. She herself was diagnosed with coeliac disease (she began her involvement as a parent) and this experience added to her knowledge and her empathy towards those she supported daily.
My adult involvement with the Society was as a volunteer, on the Eastern Branch, then helping out in the office – as so many members have done over the years. I was very fortunate that a role came up and in 2003 I became a full-time staff member. I worked in the office until 2014, throughout my own wedding, birth of two children, seeing many new people come and go and making lifelong friends within the coeliac community.
There are a number of people who deserve special mention – and I am sure I will leave someone out, but these are the ones that I recall:
Gerry Flaherty introduced me to volunteering in the Society and worked closely with me on communications, until he stepped back from the Board in 2010. It was Gerry’s hard work that secured HSE funding. Mary Twohig of the Cork Support Group was a stalwart support to the office during many years as chair, on a daily basis, while also driving the Society forward.
Neil and Marian McCormick, from Donegal, who did a savage journey to attend the monthly Management Committee meetings for many years. Billy McCann, still involved in the today who is always willing to help with any project. Staff members Helen Nzekea, Liz Favilli and Mary Kelsh, who were the core office staff in my time and who provided a fantastic service to members even as we grew and grew as more and more people wanted information about the gluten-free diet.
Others deserve recognition for their contribution, among them Leo Caldwell, Mairead Kavanagh, Carmel Clare, John and his late wife, Joan Doyle, Orla McGann who was our voluntary webmaster, Hilary Nolan who helped in the office.
As the Society turns 50 years, being almost of the same vintage, I can testify to the development, growth and success it has seen. This can be summed up by the sheer experience of going into a restaurant for lunch and expecting that they will have gluten-free bread as an option. I expect that they will understand that being coeliac is a serious thing. I will even tolerate their question ‘are you a real coeliac?’, because it comes from a place of knowledge that not all gluten free diets are created equally.
I am a real and well-fed coeliac thanks to 50 years of hard work, dedication and generosity from hundreds of people who furthered the original cause of the Coeliac Society of Ireland. To improve the lives of coeliacs and to provide support and information on the gluten-free diet. With a dedicated team, amazing volunteers and loyal members, here’s to another 50 years of living a gluten-free. Thank you to all of you.
Thank you and happy birthday, CSI.
Emma Clarke Conway,
FreeFrom Food Awards Coordinator & @wellfedcoeliac