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History of coeliac disease

Aretaeus, the Cappadocean, who lived in the 2nd century AD, gave the first acceptable description of coeliac disease. He described the characteristic stool, noted that it was more common in women than men and that children could also be affected. Vincent Ketelaer, a Dutch physician, published a book in 1669 that contains an account of a diarrhoeal illness in which he states that the faeces could be so voluminous that, "several basins or pots scarcely hold these accumulations". John Bricknell in a book written in 1737 mentioned patients suffering from the "white flux". Both of these authors may well have been describing coeliac disease.

The modern era in coeliac disease however, was ushered in by Samuel Gee who, having drawn attention to the disorder in a lecture delivered in 1887 at the Hospital for Sick Children, Great Ormond Street, London, produced his classical paper, "On the Coeliac Affection" in 1888. In this short publication, he described the features with remarkable accuracy and even suggested that, "if the patient can be cured at all, it must be by means of diet. He experimented with various diets and noted that, "A child, who was fed upon a quart of the best Dutch mussels daily, throve wonderfully, but relapsed when the season for mussels was over: next season he could not be prevailed upon to take them". Sir Leonard Parsons, Professor of Diseases of Children in Birmingham, paid tribute to this paper and wrote, "Certainly it is true that whenever people believe that they have discovered some new fact in coeliac disease, a reference to this classic cameo has a chastening effect, for time after time, they will find that their discovery has been forestalled".

During the following years many articles appeared about coeliac disease in the medical journals and books were written mainly about the clinical features of the disorder. Manipulation of the diet was the mainstay of treatment for coeliac disease, as it was for many other conditions a century ago, and restrictions were placed on the intake of fats, carbohydrates and dairy products. In 1924, Haas recommended his famous banana diet which was used extensively for many years until the introduction of the gluten free diet. In Britain during World War II coeliac children were allocated supplies of dried bananas as a supplementary ration. It is interesting to note that in these early years it was noted by several doctors that bread aggravated symptoms but none made the link to causation of coeliac disease as Willem Dicke was to do in the late 1940s.

Whether the lining of the small bowel was abnormal in coeliac disease was unknown because at post-mortem this lining quickly deteriorates and so cannot be properly assessed. This problem was solved when John Paulley, a physician from Ipswich, described the appearances of small bowel biopsies taken from patients with coeliac disease who were undergoing abdominal operations. In this way he was able to obtain fresh tissue and showed quite conclusively in 1954 that changes did occur and consisted of loss of normal villi which are finger-like projections on the bowel surface, resulting in a flat mucosa.

The stage was now set for the introduction of the two most important advances in  understanding coeliac disease - the use of the gluten-free diet and the technique of jejunal biopsy.

Willem Dicke, a Dutch paediatrician, demonstrated that the removal of wheat from the diet caused the symptoms of coeliac disease in children to disappear and reported his findings in an MD thesis in 1950. What stimulated Dicke to link coeliac disease and wheat flour will probably never be fully explained but one story is that during the Second World War wheat products were in very short supply in the Netherlands and Dicke noticed that children with the condition who were being fed other foods in place of wheat were improving. After the war when wheat consumption recommenced, the children again deteriorated with the development of symptoms. These observations may have stimulated his research and ground breaking discovery. In any event, the use of the gluten-free diet transformed the lives of children and adults with coeliac disease and is still the mainstay of treatment to this day.

Margot Shiner in 1956 developed a method whereby biopsies of the lining of the upper bowel, the jejunum, could be quickly and safely obtained by the oral route. The "Crosby capsule" developed in 1957 by an American Army Officer, was widely used to obtain biopsies for the next 25 years prior to the widespread use of fibre-optic endoscopes.

Following these two important advances coeliac disease could be easily diagnosed and treated and from the mid 1950s onwards an explosion in the understanding of the disorder occurred which has continued to accelerate. 

In 1965 dermatologists recognised that those with an itchy skin rash, dermatitis herpetiformis, had an abnormal jejunal biopsy just like coeliac disease and that the rash usually subsided on a gluten-free diet.

As more and more people with coeliac disease were being diagnosed there was need for a greater variety and more palatable gluten-free foods. In 1968 the Coeliac Society (now Coeliac UK) was founded by Elizabeth Segal and Peter Beneson to promote better foods and address the wider interests of those with the condition. There are now some 70,000 members.

At the beginning of the 1970s genetic markers of coeliac disease were identified and although the gene(s) that cause the disorder have not been fully identified, research continues in the hope that this will be achieved and so perhaps lead to new treatments that do not rely on the gluten-free diet. 

The ability to take small bowel biopsies using fibre-optic endoscopes and the development of reliable screening blood tests have greatly aided diagnosis in the last 25 years. It is now known from screening studies that about 1% of the population have coeliac disease although most of these are undiagnosed in the community. The challenge for doctors and other health care workers is to identify undiagnosed patients and offer them a gluten free diet that will restore them to full health.

Samuel Gee, Willem Dicke, John Paulley, Margot Shiner and other early workers who put coeliac disease on the map could not have imagined where their discoveries would lead as more and more fascinating information is uncovered about coeliac disease which is being used for the benefit of those with the condition.  In 2005  Coeliac UK funded the largest research program into coeliac disease and DH anywhere in the world. Thanks to some generous legacies, the Charity was able to make a grant of £760,000 to four research projects around the world.

In November 2006, the Twelfth International Conference on Coeliac Disease will be held in New York when researchers from all over the world will meet to present and discuss new research findings and plan new projects. Who knows what the future will hold as more discoveries come to light. Those who have the disorder would clearly like to consign biopsies for diagnosis and the gluten-free diet to history. The small bowel though, gives up its secrets slowly and it may be many more years before the full story of coeliac disease can be told.

Thank you to Dr Geoff Holmes, members of Coeliac UK's Medical Advisory Council,  for writing this history.

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