BAPEN Conference Living with Coeliac Disease
REPORTED BY DR NICOLA SIMMONDS BAPEN’s newly appointed Shadow Treasurer and Consultant Gastroenterologist, Luton and Dunstable Hospital.
This symposium was designed to challenge our thinking about coeliac disease and certainly achieved this
objective. Emile Richman, Dietitian, introduced the topic by giving a brief history of coeliac disease and its treatment in the nineteenth century with the mussel only diet. He moved on to some of the difficulties with the tests we use to assess the response to diet in coeliac disease and presented some emerging evidence that there may be differing strains of oats with different immunogenic properties, suggesting that this may explain some of the conflicting results of studies in the past on tolerance to oats. The talk became more erudite, touching on evolution, the perception of risk, what health means and whether the medical establishment intervene too much in our patient’s lives. Carolyn May delivered an excellent presentation that gave the audience real insight to what it was like to be a patient with coeliac disease and challenged the rather simplistic model of the 3Ds – diagnose, diet and discharge. She highlighted the ongoing concerns of many patients about the delays in diagnosis, the lifelong sentence, the social isolation and the failure to recognise other conditions associated with coeliac disease. She also challenged the audience to undertake further
BAPEN Annual Dinner
A 007 evening was held at The Majestic Hotel where BAPEN’s newest Bond (alias Tim Bowling) was set his first mission, as incoming Chair, the presentation to Dr Mike Stroud (alias Daniel Craig) of a bottle of Bollinger as a thank you gift for completing his three year long mission as BAPEN Chair. In true BAPEN style and tradition, a fabulous and fun BAPEN dinner was enjoyed by all. The hotel was awash with dozens of Sean Connery and Daniel Craig ‘look-a-likes’, glamorous ‘Bond’ girls and guest appearances from Ernst Stavro Blofeld, Goldfinger, Albert Romolo (Cubby) Broccoli (the renowned Bond producer) and a sultry, seductive Russian agent (identity preserved for international security reasons). Dinner was followed by fun at the gaming tables in the Casino and on the dance floor.
research, outlining the topics arising from questions asked by patients through the gluten- free message board and her own experiences. The scene was thus set for the debate on the
motion: ‘We are diagnosing and treating too many patients with coeliac disease?’ Dr Neil Haslam had the difficult task of arguing for the motion – more so with the audience so well aware from the previous talks about the numbers of patients who have symptoms for many years before being diagnosed and treated. He rose to the challenge magnificently and amused the audience with his tale of the two Davids (Cameron and Sanders) and references to the X-factor. He reminded us that there are also dangers in treating patients and that patients should be allowed to make an informed choice about their treatment, to not be made to feel guilty if they decide that treatment imposes burdens without providing benefit. Professor David Sanders raised the stakes with evidence suggesting that the majority of patients detected as having coeliac disease by screening felt better after 12 months on a gluten-free diet. However, he did not go as far as advocating mass screening, but felt a high index of suspicion was essential. A show of hands confirmed that Professor Sanders had won the day – but on subsequent questions, there seemed to be a more general consensus that patients needed a diagnosis and adequate information to be able to make an informed choice
about their treatment and in patients with few symptoms initially, this may mean a re-evaluation of the pros and cons of a gluten-free diet after about 12 months on the diet.
The session concluded with two oral presentations. The first demonstrated the acceptability of a combined dietitian and nurse clinic for patients with coeliac disease in Southampton and prompted discussion about the benefits of group education sessions for patients with newly diagnosed coeliac disease. It also highlighted the fact the services for patients with coeliac disease are under pressure from the increasing numbers of referrals since the introduction of the NICE guidelines in 2009, suggesting that we may be making progress in reducing the numbers of patients who are undiagnosed but are now faced with managing the increased numbers. The final oral communication by Nina Lewis, described a study of the improvements in quality of life in patients with coeliac disease treated with a gluten-free diet – even in those patients presenting with occult disease (winner of the Powell-Tuck Prize). This was a stimulating session, with several key take-home messages; we need to listen to our patients and strive to reach a diagnosis in a timely fashion and to work to providing truly informed choices and a more seamless service, with better recognition and treatment of associated conditions.
The 2011 Nutrition Society Cuthbertson Medal Lecture was given by Professor David Sanders Consultant Gastroenterologist, Royal Hallamshire Hospital & the University of Sheffield on “The Rise and Fall of Gluten!”
BAPEN In Touch No.63 January 2012
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