Cereals & Grains Association
Log In

Chapter 16: The Role of the Coeliac Societies

Fiona M. Stevens, Ex-President of the Coeliac Society of Ireland

The Science of Gluten-Free Foods and Beverages
Pages 141-171
DOI: https://doi.org/10.1094/9781891127670.016
ISBN: 978-1-891127-67-0


By the early 1960s, an increasing number of children were being diagnosed with coeliac disease (CD) and were recommend to commence a gluten-free diet. At the time, while a few paediatricians in the Netherlands, London, and Birmingham knew what constituted a gluten-free diet, the rest of the medical fraternity remained completely ignorant and certainly there were no nutritionists to guide the cook in the family through the art of making an edible gluten-free loaf. Faced with medical uncertainty and dietary difficulties, Elisabeth Segall (mother of a coeliac and a doctor's wife) and Peter Benenson (a coeliac) established the UK Coeliac Society in 1968. At the time, the role of the society was to provide much needed information about coeliac disease, to teach baking skills, and to provide moral support to newly diagnosed patients and their parents. Initially, families from many other nations used the life-enhancing services of the blossoming British society until the 1970s. In various countries, coeliacs, their relatives, and other interested parties set up similar societies providing specific information tailored to their own national circumstances. Each society then developed branches throughout the country to bring information and moral and practical help to those in rural areas. These fledgling societies prepared their own literature based on the British model. The major item was a booklet (Fig. 1) designed to educate the patient or his or her parents in the aetiology, pathophysiology, treatment, and consequences of coeliac disease. These booklets had to be couched in a language that the layman could understand and included a simple description of the typical changes in the intestine caused by coeliac disease, how the lesions have clinical consequences, the range of symptoms and signs which may occur, the role of grains, especially wheat, rye, and barley, in the development of the enteropathy, and a brief outline of the restrictions involved in adherence to a gluten-free diet.

Early gluten-free flours and bread mixes had very poor baking qualities. The resulting loaves, cakes, and pastries were tough or incredibly crumbly and they became mouldy after just a single day. The taste was not too pleasant either. Members spread the message through their society that the bread was slightly more acceptable if toasted and if a batch of loaves were made, those not required instantly could be sliced, stored in a freezer, and a few slices could be defrosted and toasted as required. Adventurous cooks devised recipes to disguise the taste of the flour/bread mix and these were disseminated at society functions or cookery demonstrations. Companies manufacturing gluten-free flours and bread mixes also provided cookery demonstrations with an emphasis on using their products—not entirely altruistic, but of great benefit to many individual coeliacs.

Frequently, newly diagnosed coeliacs or their parents, confused by information overload, left the hospital clinic with the idea that the only food that could be safely eaten was that made from the gluten-free flour/bread mix. It had to be stressed at subsequent hospital appointments or meetings of their local coeliac society that naturally gluten-free foods such as vegetables, fruit, meat, fish, and dairy products were harmless and, in fact, necessary to provide a balanced diet. There were obviously a large number of manufactured products that contained no gluten and could be eaten, but how could a shopper identify such gluten-free food stuffs? A compilation of acceptable foods in a specifically designed list was necessary. Societies swung into action and manufactured products lists were produced. In the early days, these were limited in their scope and often contained products later shown to contain significant quantities of gluten or other prolamins. Current books, frequently referred to as “the coeliac bible,” are well researched and provide a life line for coeliacs out shopping for food (Fig. 2).

Most societies circulated newsletters every 6 months or so to inform their members of upcoming events, to alert them to any deletions from the manufacturers list, and to inform them of recent medical progress where relevant. Many societies produced information videos (including cooking demonstrations) which could be played at smaller branch meetings throughout the country for the benefit of members who could not travel to venues in the bigger urban centres. Another greatly appreciated service provided by societies was the annual/biannual convention/study day which usually took place over a weekend in a hotel. Local and international speakers would be invited to address the members and to take part in a question and answer session. They were able to listen to invited speakers and officers of the society, bringing about the realisation that there are many other individuals trying to cope with exactly the same problems as themselves. With prior education of the catering staff at the venue, all meals and snacks would be gluten-free, so coeliacs in attendance would have a convivial day or two being able to eat out (a pleasure they were rarely able to indulge).

For the individual coeliac who wished to experience the delights of a restaurant, small “eating out cards” were produced by societies, to be handed to the chef, explaining in simple language how to provide a member with a gluten-free meal from the resources of their kitchen. The card, along with greater public awareness of coeliac disease and its dietary restrictions, has enhanced the social life of many a coeliac. Translation of the card into many languages has opened up the world to the coeliac with the travelling bug. Thus, national coeliac societies were set up and staffed by enthusiastic volunteers. They provided literature, informative lectures, cookeery expertise, and most importantly, moral support for individuals whose lifestyles were undergoing radical changes. Membership fees were rarely sufficient to cover all costs of these services, so fundraising events and applications to government agencies for grants became necessary, especially in the case of small societies such as the Coeliac Society of Ireland (CSI). Large societies were able to generate sufficient funds to be able to award grants to support academic research into various aspect of coeliac disease.

In 1988, the Association of European Coeliac Societies (AOECS) was founded to further the common interests of the European Coeliac Societies. It considers problems of international importance, coordinates activities, and promotes the exchange of information for the benefit of Europeans with coeliac disease or dermatitis herpetiformis. AOECS is represented at meetings with Codex Alimentarius dealing with the control of gluten (prolamin) levels in foodstuffs (CODEX Standard). To date, one of its biggest achievements has been the adoption of the international gluten-free symbol (the crossed grain) throughout Europe. The purpose of this symbol is to indicate a food that complies with the CODEX Standard and it is used on both foods produced for special dietary purposes and those foods and drinks for normal consumption which by their nature are gluten-free and safe for coeliacs. The AOECS has been at the forefront in lobbying to lower the CODEX standard. In the near future, the upper threshold for gliadin in foods rendered gluten-free will be 100 ppm and that of naturally gluten-free foods (but potentially contaminated) will be 20 ppm. Along with the new strict labelling regulations, the individual coeliac will now be protected from inadvertent ingestion of gluten.