History of Coeliac UK

1968 - 1977

• Coeliac UK was founded in 1968 by Elizabeth Segall, wife of a doctor and mother of a child with coeliac diseaseA condition where a person is unable to eat gluten as it makes their body attack itself. , and Peter Benenson, who had the condition and well-known as a founder of Amnesty International
• First called The Coeliac Society
• First food list went out to Members on sheets of foolscap paper
• First local Group was established in Birmingham
• Gluten-freeWhen a food has less than 20 parts per million (ppm) of gluten so it is safe for people with coeliac disease to eat. symbol launched 1971
• In 1971 the Charity had around 5000 Members. This rose to 12,000 members in 1976

1978 – 1985

• 14,000 Members in 1977, rising to 21,000 in 1984
• Transfer of Members’ names and addresses onto addressing machine cards. Mrs Myra Mills types 15,000
• The handbook is translated into French and Spanish. In France, only coeliac children are recognised
• Letter received from the Blood Transfusion Services advising that people with coeliac disease are not suitable blood donors
• 30,000 copies of the food list is printed
• Society moves offices from a bed-sit to offices in Willesden High Road

1986 – 1989

• The Society moves to bigger offices in High Wycombe
• 23,000 Members in 1987, rising to 27,363 in 1989
• A.C.B.S release a misleading leaflet to all GPsGeneral Practitioner, or local doctor regarding prescriptions, which results in some Members being refused prescriptions
• 50 local groups
• First meeting of European Coeliac Societies takes place in Barcelona, Spain. This would later become the AOECS

1990 – 2003

• Transfer of Member records to computer took place
• By 1990 we had 12,000 Members
• 24 hour answering-machine is installed to give updates on food lists
• In 2001 the Charity renamed itself Coeliac UK and had 49,000 members
• 4 glutenA protein that is found in the cereals wheat, barley and rye. -free living events were hosted throughout the year, combining food exhibitions, workshops and cookery demonstrations. 2,500 Members and non-members attended
• 58,934 Members
• The Coeliac Society becomes Coeliac UK
• As we expanded, we moved to new premises within High Wycombe
• Crossed GrainOur magazine which is published three times a year. is produced on tape for blind Members

2004

• The Medical Advisory Council was born: a pool of medical experts on hand to offer advice and guidance on all aspects relating to coeliac disease to the Charity
• Held our first Awareness Day
• Launched an online newsletter – eXGOur online email newsletter which is sent to our Members each month.      
• Achieved income of over £2 million for the first time
• The coeliac community are saddened by the death of Co-founder of the Charity - Elizabeth Segall
• Coeliac UK is seen as one of the largest health support charities in the UK with an estimated 1:4 of the diagnosed population being a member
• An unprecedented legacy of over £500,000 was left to the Charity by Miss Lydia Costain. This would later enable us to offer the largest grant ever awarded to fund research into coeliac disease

2005

• We had over 67,000 Members by the end of 2005
• Official launch of the All Party Parliamentary Group at Westminster, establishing a voice within Parliament. Thirty four MPs and Peers from all the main parties supported the Group
• 75,000 Christmas cards sold
• Awareness WeekOur main annual campaign with focuses around a theme to raise awareness about coeliac disease. campaigns delivered over £300,000 worth of editorial space in the media
• We hosted our first medical research conference at the Royal Society of Medicine in London
• Co-founder of Coeliac UK and Founder of Amnesty International – Peter Benenson dies
• In 2005 Coeliac UK announced the largest recorded grant into researching coeliac disease and dermatitis herpetiformisUsually shortened to DH, this is a form of coeliac disease where the skin is affected with small blisters. (DH). A total of £760k was committed to 4 projects and a clinical fellowship.
• In 2005 Coeliac UK hosted the Association of European Coeliac Societies Annual Conference for the first time in Edinburgh

2006

• In 2006, the Charity worked in partnership with a number of MPs and Peers to establish the All Party Parliamentary Group on coeliac disease and DHAll Party Parliamentary Group on Coeliac Disease and DH is a special interest group in Parliament in Westminster which MPs and Peers can join. It allows a forum for issues affecting people with coeliac disease to be discussed. . The Charity won a £500k bid for a collaborative project on improving primary care diagnosis and management of the condition
• We launched a new and more interactive website which provided Members with extra benefits like the venue guide and recipe database
• Introduction of a new MembershipIf you have been diagnosed with coeliac disease then you can become a Member of Coeliac UK. database, compatible with the new website which enabled us to streamline and tailor our services to match individuals’ needs
• Our collaborative research included -: Working towards improving care practice with the Health Foundation, Considering international standards for gluten-free foods with the Food Standards Agency and Working with the Health Economics Research Centre at the University of Oxford to analyse the costs associated with coeliac disease
• Over 76,000 Members at the end of 2006

2007

• In 2007 a Cross Party GroupCross Party Group on coeliac disease and DH in Scottish Parliament and also the Welsh Assembly is a special interest group which MSPs and WAMs can join. We are on this Group as a means of exerting pressure on Parliament.  on coeliac disease and DH was established in the Scottish Parliament. Later in the year, the Charity succeeded in winning a £9 million grant from the EU as part of a pan European collaboration to develop a new point of care diagnostic tool
• Training courses were provided to 123 pre and post registered dietitians and 22 dietetic assistants throughout 2007
• We worked with the Food Standards Agency to promote a change to the gluten-free labelling standard which would, based on research carried out by Coeliac UK the previous year, provide increased clarity for Members. The results of this work finally appeared in November when, after 13 years of debate, a new worldwide standard was approved for final ratification in 2008

2008

• 2008 saw the 40^th anniversary of the Charity and a number of events took place to celebrate the milestone and focus on the victories attained by the Charity in the last 4 decades, improving life for people with coeliac disease
• Food Sector Advisory Panel was established and the committee met for the first time. Populated by key influencers in the food sector, the panel offers key intelligence, enabling Coeliac UK to move forward in its objective to improve the catering sector’s performance through education and awareness
• Successful introduction of Membership fees as voted, by an overwhelming majority of Members, in a ballot the previous year
• 10,000 new Members
• Developed a partnership with the British Dietetic Association (BDABritish Dietetic Association - the professional association for dietitians in the UK.) to promote an accredited post-registration course for dietitians to be rolled out across the UK
• We launched an electronic version of the Food and Drink DirectoryOur annual Directory of gluten-free food and drink which manufacturers voluntarily submit to.
• It was identified that closer attention to our Scottish Members and Groups was needed and as such a dedicated Campaigns and Communications post was created solely to support Members in the area and to campaign more effectively throughout Scotland
• £76,000 worth of research funding awarded to the University of Birmingham studying the impact of coeliac disease on people’s social wellbeing
• We hosted our second Research conference, showcasing the findings of our research grants to Members and Medics