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History of Coeliac UK

2016

  • Coeliac UK announced a new partnership with Marks & Spencer, with the supermarket pledging to support our campaigns for the next three years.
  • Leading UK supermarket Morrisons signed up to the Gluten-free Guarantee scheme, joining Asda as a location where people with coeliac disease can be sure to find their staple food shop.
  • Coeliac UK launched the first ever gluten-free networking event for food industry professionals.
  • The Charity continues to campaign to keep gluten-free staple items available on prescription for people diagnosed with coeliac disease.

2015

  • Actress and television personality Caroline Quentin joins Coeliac UK as Patron.
  • Coeliac UK launches its ambitious diagnosis campaign, Is it coeliac disease?, in a bid to find the half a million undiagnosed people in the UK. Key aims of the two year campaign include halving the time it takes to get a diagnosis and confirm a diagnosis of an additional 250,000 by 2020
  • The Charity unveils the UK’s first ever coeliac disease television advert to support the diagnosis campaign
  • In April, new compulsory standards were introduced in NHS hospitals in England. Coeliac UK advised the  Hospital Food Standards Panel on gluten-free provision.
  • Coeliac UK continues its fight to keep staple gluten-free items on prescription for people diagnosed with coeliac disease

2014

  • Our Food Policy Lead, Kathryn Miller, won the Healthy Living Digital Hero Award as part of the TalkTalk Digital Hero Awards 2014 for her work on our smartphone app.
  • We launched our Gluten-free Guarantee (GfG) campaign, and Asda was the first supermarket to sign up to the scheme.
  • In May, new research was published by The University of Nottingham which found a fourfold increase in the rate of diagnosed cases of coeliac disease.
  • Allergen information rules under the Food Information Regulations came into force from 13 December, meaning changes to the way packaged foods are labelled and to the way caterers provide information.

2013

  • Our first Welsh office opens in Cardiff supported by a dedicated Campaigns and Volunteers' Manager for Wales.
  • We launched our new look website.
  • Our first smartphone app is developed to provide Members with on the move access to our Food and Drink Directory and Venue Guide.
  • World renowned mountaineer Joe Simpson supports our Awareness Week campaign.

2012

  • The Charity’s Members voted to allow those with no medical diagnosis of coeliac disease to join the Charity as full Members for the first time since the Charity was created in 1968. The vote reflected the need to better support those seeking diagnosis and friends and family.
  • Launch of our first services to support the catering industry with new catering trademarks for accredited restaurants. Domino’s and Pizza Hut become the first catering chains to take up the symbols.
  • Our first one to one mentoring scheme, Member2Member, is launched matching experienced parents of children with coeliac disease to those with a recent diagnosis.
  • A further £100k committed to medical research.

2011

  • We fight to stop proposals to severely restrict access to prescriptions mainly in the south of England, winning concessions in many areas.
  • Launch of our first research into the conditions needed for gluten-free catering to comply with the new EU law on labelling. Research successfully demonstrates it is possible to provide safe gluten-free dishes in a commercial kitchen against the expectations of many.
  • Esther Rantzen supports our Awareness Week campaign.
  • Research commissioned to show the extent of diagnosis with irritable bowel syndrome before that of coeliac disease and the potential for misdiagnosis.

2010

  • In response to restrictions on gluten-free prescriptions in some areas of the country, the Charity works with the National Pharmacy Association and the Pharmacy Services Negotiating Committee to develop a new and more cost effective approach to prescribing.
  • A joint venture with Springboard, the catering education charity, saw the launch of our first online training course for caterers aged 16-18 in catering.
  • Our Gluten-free Chef of the Year competition incorporates a live cook off for the first time, with a judging panel headed up by our Food Ambassador, Phil Vickery.

2009

  • First Government guidelines on diagnosis of coeliac disease published by the National Institute of Clinical and Health Excellence are published after sustained lobbying by the Charity.
  • A petition with over 8,000 signatures demanding better diagnosis is handed in to Number 10 Downing Street by the Charity’s Health Ambassador, Dr Chris Steele.
  • A new EU law is introduced setting clear gluten levels for gluten-free labelling for the first time. The Charity lobbies hard to make sure the impact on caterers does not reduce choice for consumers.
  • A further £300k is committed to medical research.

2008

  • 2008 saw the 40th 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 four 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. Over 50,000 join the new scheme.
  • We launched an electronic version of the Food and Drink Directory.
  • Our first office in Edinburgh opens with a dedicated Campaigns and Volunteers' Manager.
  • We win our first European funded grant of nine million Euros in a partnership with research institutes and small businesses across Europe to develop a point of care test for the genetics and immunology of coeliac disease. The project is called CD-Medics.
  • The Charity joins social media channels Facebook and Twitter to reach a wider audience.

2007

  • In 2007 a Cross Party Group 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.

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 DH. 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.
  • 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.

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. 34 MPs and Peers from all the main parties supported the Group.
  • 75,000 Christmas cards sold.
  • Awareness Week 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.
  • Cofounder 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 herpetiformis (DH). A total of £760k was committed to four projects and a clinical fellowship.
  • In 2005 Coeliac UK hosted the Association of European Coeliac Societies Annual Conference for the first time in Edinburgh.

2004

  • The Medical Advisory Council was born: a pool of medical experts to provide advice and guidance on all aspects relating to coeliac disease to the Charity.
  • Held our first Awareness Day.
  • Launched an online newsletter – eXG.
  • Achieved income of over £2 million for the first time.
  • The coeliac community is saddened by the death of cofounder 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.

1990-2003

  • Transfer of Member records to computers took place.
  • By 1990 we had 12,000 Members.
  • 24 hour answering machine is installed to give updates on the gluten-free food list.
  • In 2001 the Charity renamed itself Coeliac UK and had 49,000 members.
  • Four gluten-free living events were hosted throughout the year, combining food exhibitions, workshops and cookery demonstrations. 2,500 Members and non Members attended.
  • As we expanded, we moved to new premises within High Wycombe.
  • Crossed Grain is produced on tape for our blind Members.

1986-1989

  • The Society moves to bigger offices in High Wycombe.
  • 23,000 Members in 1987, rising to 27,363 in 1989.
  • ACBS release a misleading leaflet to all GPs regarding prescriptions, which results in some Members being refused prescriptions.
  • 50 Local Voluntary Support Groups.
  • First meeting of European Coeliac Societies takes place in Barcelona, Spain. This would later become the AOECS.

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 (the beginning of the Food and Drink Directory) is printed.
  • Society moves offices from a bedsit to offices in Willesden High Road.

1968-1977

  • Coeliac UK was founded in 1968 by Elizabeth Segall, wife of a doctor and mother of a child with coeliac disease, and Peter Benenson, who had the condition and is also well known as a founder of Amnesty International.
  • First called The Coeliac Society.
  • First list of gluten-free food (the beginnings of the Food and Drink Directory) went out to Members on sheets of paper
  • First Local Voluntary Support Group was established in Birmingham.
  • Gluten-free symbol launched 1971.
  • In 1971 the Charity had around 5,000 Members. This rose to 12,000 Members in 1976.
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