Under the auspices of the Clinical Resource Efficiency Support Team (CREST), a sub-group chaired by Dr William Dickey, Consultant Gastroenterologist, Altnagelvin Hospital and comprising health care professionals from varied backgrounds, was established to produce guidelines on the Diagnosis and Management of Coeliac Disease in Adults.

The CREST guidelines were launched at a half-day conference, on Friday 12th May 2006, at the Tullyglass House Hotel, Ballymena. Approximately 100 delegates from the various specialties involved in the management of coeliac disease attended the conference.

They are available to view on the CREST website.

The Coeliac Working group of the British Society of Paediatric Gastroenterology Hepatology and Nutrition (BSPGHAN) have published a document called 'Guideline for the diagnosis and management of Coeliac disease in children' which can be downloaded from the BSPGHAN website.

These guidelines were derived from the available evidence (including the North American Paediatric guidelines document) after discussion and debate between members of the Managed Clinical Network for Paediatric Gastroenterology. It represents the views of the network members only.

The Primary Care Society for Gastroenterology (PCSG) newest guidelines entitled 'The Management of Adults with Coeliac disease in Primary Care' are available in PDF format. See the PCSG website for further information.

Following Coeliac UK's successful intervention to influence North Lincolnshire Primary Care Trust (PCT) to change its policy of abandoning subscriptions for gluten-free foods, the Charity is now monitoring other PCTs, which may in turn adopt similar policies. Click on this link to read Coeliac UK's statement regarding prescriptions.

The aim of this study was to evaluate the feasibility and cost effectiveness of a case finding approach for early identification of cases of coeliac disease, carried out by primary care practitioners.

The case-finding strategy used was based on testing for anti-tissue transglutaminase IgA antibodies in subjects showing predefined signs or symptoms or belonging to at- risk groups. Sixty-nine primary care doctors and 60 primary care paediatrians took part in the study. In total, 1041 adults and 447 children were selected for anti-tissue transglutaminase testing during the year of the study (2001). Thirty-one (2.08%, 19 adults, 12 children) were ultimately diagnosed as coeliac patients. No cases of coeliac disease had been diagnosed in the year previous to the study, 29 subjects were diagnosed as coeliac in the year after the completion of the study.

The prevalence of confirmed coeliac disease in the population increased from 1:1506 to 1: 1073 in adults and from 1:827 to 1: 687 in children from year 2000 to 2001.

When cases diagnosed in 2002 are included, the prevalence of diagnosed coeliac disease was found to be 1:832 for adults and 1:602 for children. The cost for each new case diagnosed was calculated to be 923.25 euros.

The authors conclude that case-finding is a feasible and successful strategy for detecting undiagnosed coeliac patients and has the important added value of increasing awareness of the disease among primary care physicians.

Case-finding represents a cost-effective alternative to population screening for reducing the burden of undiagnosed coeliac disease.

Bert I et al; Digestive and Liver Disease; 38 (7): 461- 467, 2006

Many adults with coeliac disease have a silent or atypical form of the disease and iron deficiency anaemia may be the only presenting symptom. These patients often remain undiagnosed due to lack of awareness about the multifaceted presentation of the disease.

This study examined a cohort of 108 patients with iron-deficiency anaemia in whom coeliac disease had been diagnosed, with 108 patients comparable for age and sex who were identified as non-coeliac iron-deficiency anaemia patients.

The results showed that the mean duration of iron deficiency anaemia before diagnosis  was 66 months in the coeliac disease patients, and 14 months in the iron deficiency anaemia control group (p = 0.0001). The occurrence of at least one gastrointestinal symptom, not spontaneously reported, was observed in 85% of patients with coeliac disease and in 63% in the control group (p = 0.001). The accompanying presence of diarrhoea, abdominal pain and bloating was detected in 14% of patients with coeliac disease with respect to 3% in the control group (p = 0.005).

The authors conclude that from this study, the vast majority of coeliac disease patients with iron deficiency anaemia presentation were unaware of the gastrointestinal symptoms that were present, probably due to a mechanism of adaptation to a chronic condition and thus considered by the patient to be 'normal'. Understanding this relationship is useful to aid compliance to a life-long gluten free diet.

Baccini F, Spiriti MA, Vannella L, Monarca B, D Fave G, Annibale B
Alimentary Pharmacology & Therapeutics. 23 (7): 915-21, 2006

This study aimed to examine the long term safety of oats in the treatment of coeliac disease. Twenty-three children in remission from coeliac disease were randomised either to oats or gluten challenge; when small bowel histological relapse was evident after the challenge (evident within 12 months in all patients),a gluten free diet including oats was started. In addition, nine newly diagnosed coeliac patients adopted an oat-containing gluten free diet.

During the trial, the median daily intake of oats was 45g/d in coeliac patients in clinical  remission randomized to oat challenge. For children in the gluten challenge group, the median daily consumption of gluten was 14g; after histological relapse patients adopted a gluten free diet containing a median intake of 41g of oats per day. In newly diagnosed coeliacs, the median consumption of oats per day was 43g.

After the trial, children were allowed to consume oats freely; follow up was extended up to 7 years.

The results showed that in coeliac children in remission, oats had no detrimental effect on intestinal histology or serology during the 2 year trial. In contrast, the gluten challenge group relapsed after 3-12 months. Complete recovery was accomplished in all relapsed and newly detected patients on an oat-containing gluten free diet. After the trial, 86% of the children preferred to consume oats and they all remained in remission.

The authors conclude that in most children with coeliac disease, long-term consumption of oats is well tolerated, and it does not result in small bowel mucosal deterioration or immune activation.

Holm K, Maki M, Vuolteenaho N, Mustalahti K, Ashorn M, Ruuska T, Kaukinen K
Alimentary Pharmacology & Therapeutics 23 (10): 1463-73, 2006

Dietitians are lead therapists in diet education and so form a key target group in coeliac disease management and management of the gluten-free diet. The British Society of Gastroenterology guidelines (available via the BSG website ) on the management of coeliac disease recommend minimum standards regarding dietetic intervention. There is currently no information available on dietetic services in coeliac disease management.

Coeliac UK has completed a nationwide survey to understand more about the role NHS dietitians play in coeliac disease management with a view to supporting the role of the dietitian and aiming to improve the care of the person with coeliac disease. Coeliac UK has teamed up with Dr Michael Nelson, Reader in Public Health Nutrition from King's College, London to complete the project and produce a report which has been fowarded for publication in the JHND.

Two variables were used as the primary markers of the level of provision of care, number of FTE dietitians per 100,000 population, and number of hours of care per month dedicated to coeliac patients per 100,000 population. These two markers were analysed in relation to factors such as post-registration training, dietetic specialist status and having a multi-disciplinary approach. The speed of seeing patients at diagnosis and regularity of review were also factors that were considered.

At present, we are unsure of the economic impacts of coeliac disease on patients, the NHS and society. Coeliac UK has commissioned a literature review and a cost of illness study of coeliac disease to be undertaken by the Health Economics Research Centre, University of Oxford.

One of the main issues surrounding coeliac disease is missed or late diagnosis so the role of GP's is very important. The main focus of the study will be on number and costs of primary care consultations, tests, referrals and prescriptions.

The main objective of the study is to provide an estimate of the economic costs of coeliac disease, including direct healthcare costs, patient costs and productivity losses. The project is due to report by the end of the year.

The current level of gluten that is permitted in gluten-free foods is 200 parts per million or 200mg per kg but there has been on-going debate about the need to review the Codex standard for gluten-free labelling purposes since the 1980's. Coeliac UK was awarded funding by the Food Standards Agency to complete a literature review on threshold levels for gluten-free labelling purposes.

The research team is led by Dr Tony Akobeng, with Dr Adrian Thomas, both Consultant Paediatric Gastroenterologists from Central Manchester and Manchester Children's University Hospitals and Dr William Dickey, Consultant Gastroenterologist, Altnagelvin Hospital, University of Ulster and Norma McGough, Dietitian from Coeliac UK.

Work is well underway on the literature review into threshold levels. The scope of the project takes into account threshold studies, methods of detection of gluten, the spectrum of people affected by coeliac disease and variability in levels of gluten consumed by different people around the world.

This will provide information on threshold levels for gluten free labelling purposes and also help to identify further research needed in this area.
The FSA will be reporting the findings of the study to the Codex Committee later this year, in October.

The focus of this meeting is to examine the analytical and clinical data relating to the codex standard on gluten-free food and to the group proposal for an amendment based on updated scientific evidence.

Venue: Area and Science Park in Trieste, Italy

Date: 28th-30th September 2006

This meeting will take place a month before the 28th session of the Codex Alimentarius Committee on Nutrition and Foods for Special Dietary Uses (CCNFSDU) which is to be held in Chiang Mai, Thailand 30th October-3rd November 2006.

Coeliac disease will take center stage in New York City as the Celiac Disease Center at Columbia University hosts the XII International Celiac Disease Symposium 2006.

Date: November 9th-11th, 2006

This symposium is expected to attract healthcare industry leaders, clinicians, nutritionists, diagnostic and pharmaceutical executives, scientists, policy makers, patients and journalists and will encompass every aspect of adult and paediatric coeliac disease- diagnosis, treatment, science and public policy.
For further information and to see a full programme follow link to http://www.celiacdiseasecenter.columbia.edu/symposium

The European Society for Pediatric Gastroenterology and Hepatology and Nutrition (ESPGHAN) is having its 2nd meeting entitled 'Genetic Factors in Functional and Structural GI disorders: scientific advances and clinical implications' on October 12th-15th, 2006.

Venue: Grand Hotel Quisisana, Capri (Naples), Italy

For further information please follow this link:  http://www.messaggi-events.org