Coeliac UK's diet and health team have been inundated with enquiries about the Biocard self testing kits since they were launched on line earlier this year.

The Biocard Coeliac Test can be purchased from www.coeliactest.co.uk for £19.99.

Click on this link to view the full Coeliac UK statement on home testing kits.

Several studies in recent months have raised the possibility of an enzyme treatment for those with coeliac disease. Researchers have found that a proenzyme form of endoprotease B (EP-B2) from germinating barley seeds has been effective in digesting gluten, leading to full detoxification of harmful proteins.

Dr Kamran Rostami, medical expert for Coeliac UK says: ''Although new advances in the field of treatment of coeliac disease are exciting and promising, there is still a long way to go to be able to apply these recommendations in proper human subjects. We have no information about their efficacy in long term and the possible side effects which could be a limitation in their use. I believe this utopia will be achieved one day. We are clearly making progress and the keystone to a normal life for gluten sensitive people is predictable and achievable. But meanwhile it is too early to say to our patients that alternative treatment of coeliac disease is now available. Future clinical trials will determine whether enzyme therapy could be used as a partial or full alternative treatment, helping with less restriction or replacing completely a gluten free diet.''

Gass J, et al; 'Effect of barley endoprotease EP-B2 on gluten digestion in the intact rat'. J Pharmacol Exp Ther. 2006 June   

Bethune MT, et al; 'Heterologous Expression, Purification, Refolding, and Structural Functional Characterization of EP-B2, a Self-Activating Barley Endoprotease'. Chem Biol, 2006 13(6):637-47

A downloadable document is available to assist general practitioners, dietitians, practice nurses and pharmacists in the decision-making process when recommending or prescribing the quantities and range of gluten-free foods available on prescription.

The guide provides recommendations for the minimum quantities that should be prescribed in order to achieve a well-balanced and varied gluten-free diet and should be used together with a full dietary assessment and advice from a registered Dietitian. The recommendations can also be used as part of local protocols addressing the overall management of people with coeliac disease.
Please visit www.glutenfreefood.co.uk for your copy.

Untreated coeliac disease is associated with hypocholesterolaemia, which is thought to contribute to a favourable cardiovascular risk profile. This has led to the suggestion that treatment with a gluten free diet may result in an elevation of the serum cholesterol level and hence worsen this risk profile. However there is a lack of evidence to back this up. This study aimed to examine the effect of a gluten free diet on lipid profile.

From a database of 700 patients, 132 adults with biopsy proven coeliac disease were identified who had responded well to a gluten free diet and had lipid values taken at the time of diagnosis and again after being on the gluten free diet for a minimum of 6 months (median 20.5 months). Those who did not respond to a gluten free diet or were poorly compliant (as assessed by physician and dietitian) were excluded, along with those who had dyslipidaemia and were already on lipid-lowering medications, or those with diabetes, malignancy, thyroid disease, liver disease, IBD, or pancreatitis at the time of diagnosis.

In both men and women, the results showed that there were significant increases in total cholesterol and HDL cholesterol, but not LDL cholesterol. The greatest increase in total cholesterol and HDL was in subjects with the lowest initial values. LDL/HDL ratio significantly decreased. The largest increase in HDL was seen in subjects with more severe disease as indicated by low albumin level and presence of total villous atrophy.

The authors conclude that treatment of coeliac disease with a gluten free diet resulted in improvement in the lipoprotein profile, which included an increase in HDL and a decrease in LDL/HDL ratio. Despite an increase in total cholesterol, the authors suggest that HDL has greater significance as a risk factor, and that the findings of this study should allay potential concerns that dietary treatment of coeliac disease worsens cardiovascular risk.

Brar P, Y.Kwon G et al; Change in Lipid Profile in Celiac Disease: Beneficial Effect of Gluten-Free Diet. The American Journal of Medicine (2006) 119, 786-790  

With screening studies suggesting that coeliac disease has a much greater prevalence than previous thought, there is an increasing use of serology in screening asymptomatic people and testing those with suggestive features.

The aim of this systematic review is to compare the sensitivities and specificities of the endomysial (EMA) antibody and the tissue transglutaminase (TTG) tests. The EMA test is subjective, labour intensive and one common substrate (monkey oesophagus) is from an endangered species. Tissue transglutaminase is the antigen that is recognised by the EMA and uses either guinea pig or human recombinant TTG and therefore seems to preclude the problems with the EMA test.  Thus there is a move to replace the EMA test.

Using electronic databases PubMed, Medline and Ovid relevant papers were searched using the terms TTG and EMA antibodies.

In all 34 studies were identified. Both EMA antibody and TTG antibody were found to have very high sensitivity (93% for both), and specificities (>99% and >98% respectively). Review studies comparing EMA antibody with human recombinant TTG show that EMA antibody more often has a higher specificity and human recombinant TTG antibody more often has a higher sensitivity.

The authors conclude that human recombinant TTG antibody is the preferred test for screening asymptomatic people and for excluding coeliac disease in symptomatic individuals with a low pretest probability for coeliac disease. Furthermore it has a number of practical and financial advantages.

N.R. Lewis & B.B Scott; Alimentary Pharmacology & Therapeutics (2006) 24, 47-54

There is limited data on the composition of diets of adult patients in the UK on a strict gluten free diet (GFD). There is concern that since gluten containing foods contain a high proportion of complex carbohydrates, there may be excess consumption of fats and proteins (with a decrease in carbohydrates) and a corresponding increase in energy consumed. 

Over an 8 week period, all patients seen in a weekly specialist gastroenterology clinic, with histologically confirmed coeliac disease and on a strict GFD were invited to prospectively fill out a validated 3-day food diary.  22 patients were identified, of which 14 returned completed diaries.  Completed diaries were inputted into a computerised nutrient databank.  Data for gluten-free foods not in the nutrient databank was obtained from "Gluten-free booklet 2003" published by the British Dietetic Association. 

Results were compared against the National Diet and Nutrition Survey of adults 19-64, 2003. Mean age of respondents was 52 years (34-73), with median age at diagnosis being 47 (19-70). Median length of time on a GFD was 11.5 (1-22) years.  12 out of the 14 patients were female.  Overall, in those on a strict GFD, 38% of energy was obtained from fats, 48% from carbohydrates and 14% from protein.  This compares with 34% from fats, 49% from carbohydrates and 17% from protein in a background population from Northern England.  These differences were not significant.  Average energy intake for the 2 males was 2000±93.2 kcal/day (cf. 2323 kcal/day in the background population) and 2205±138 kcal/day (cf. 1632 kcal/day) for the females.  Mean BMI for females was 24.1±1.31. 

We concluded that in this relatively small sample, percentage of energy obtained from the major food groups did not differ significantly from the background population.  However, female patients with coeliac disease on a strict GFD may have a significantly higher energy intake, but this is not reflected in an increased BMI.

G.G.Robins, S. Hamlin, P.D.Howdle (2003-4)
Academic Unit of Medicine, Clinical Sciences Building, St. James's University Hospital, Leeds, UK

To help us develop our services and resources, Coeliac UK is about to carry out a research project into the food information needs of the coeliac population as a whole.

We want to find out what information people need, at what stages after diagnosis and by whom they think this information should be provided. Coeliac UK currently has approximately 70,000 members, which accounts for just over half of the estimated diagnosed population.

The aim of this project is to find out the information needs of both non-members and members of Coeliac UK, so that we can increase the numbers of people we are able to help after they have been diagnosed with coeliac disease. The first part of this research will involve a questionnaire which will be sent out to a representative group of our members during October 2006.

We plan to reach non-members who have coeliac disease in the first part of 2007, probably via the dietitians who took part in the nationwide dietitians' survey in 2005.

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 this Codex standard. Coeliac UK was awarded funding by the Food Standards Agency (FSA) to complete a literature review on threshold levels for gluten-free labelling purposes.

The FSA is presenting the outcomes of this research to the European Commission and Member States. The findings will inform the discussions at the EU Co-ordination meeting prior to the International Codex Committee on Nutrition and Foods for Special Dietary Uses where the Draft Revised Standards for gluten-free foods will be discussed. The meeting will be held in Chiang Mai, Thailand from 30th Oct-3rd November.

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. 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.

We are working on the first phase of this research project finalising a report based on a literature review of the socio-economic aspects of coeliac disease and completing a survey of a cross representative survey of members of Coeliac UK. The survey looks at health status before and after diagnosis, impact on cost of diet, take-up of prescriptions and length of time getting diagnosed. The final phase of the research will involve a cost of illness study using GP Research Database analysis.

Prior to 2005, patients with newly diagnosed coeliac disease in the Harrogate area received an initial one hour dietetic out-patient appointment, followed by a 20 minute follow up appointment ~six weeks later. After this time there was no mechanism for further dietetic input, unless the patient was re-referred by their GP or consultant with specific dietary problems (a situation which occurred infrequently). The patients received an annual medical review by the gastroenterology team in a 'normal' out-patient clinic, but there was no dietetic expertise available in this clinic.

In 2005, a specialised 'coeliac clinic' was established in partnership between the Trust's gastroenterology and dietetic services.

Coeliac clinics are held in the early evening (5.30 - 7.30pm), 3-4 times per year to allow all coeliac patients under the care of the gastroenterologists (approximately 170 patients) to be seen annually. Patients have routine blood tests done prior to attending the clinic.

In addition, a specialist dietitian is available in the clinic. All patients have the option of dietetic review if they wish. (NB At diagnosis, all patients still receive the initial one hour dietetic appointment and a 20 minute follow up appointment in the dietitian's own clinic). Manufacturers of gluten free products are also invited, along with members of the Harrogate branch of Coeliac UK.All patients attending the clinics on 2 specified dates were asked to complete an anonymous questionnaire. Thirty-nine patients responded.

The feedback from patients has been very positive. 64% patients find the evening clinic appointments more convenient. The patients who found it less convenient tended to be elderly, whereas the younger patients felt that not having to take time off work was important. All patients have been given the option to continue to attend the 'normal' gastroenterology clinic, instead of the coeliac clinic, if they wish.

82% felt that having the opportunity to speak to the dietitian was important. The most common topics for questions include recent changes to food labelling regulations, adequacy of dietary calcium intake and queries regarding prescribable gluten free foods. Further review appointments are arranged for patients to attend dietetic clinics if deemed appropriate.

This service is to continue following the favourable feedback and the results will be fed back to the Harrogate branch of Coeliac UK.

Contact details for the Senior Specialist Dietitian involved in the audit are available from the Diet and Health team on request.

Coeliac UK wants to help all health care professionals working with those with CD communicate in order to highlight innovative projects that may help improve the care of those diagnosed with CD.
 
If you have been involved in, or know of, any project carried out in your local area, then we want to hear from you!
 
Some examples may be studies or audits looking at:
 
• Serological testing as a tool to assess compliance to the GF diet/diagnosis of CD
• How certain groups cope with additional dietary restrictions in conjunction with the gluten-free diet (E.g. those with Type 1 diabetes)
• Different systems for providing gluten free food on prescription
• Education tools for managing the gluten free diet
• Development of local guidelines e.g. calcium requirements in children, supplementation, oats on the GF diet
• Provision of gluten free meals in hospitals and nursing homes
• Care pathways in the management of CD e.g. dietitian/GP/nurse/gastroenterologist led coeliac clinics

If you would like to make your invaluable contribution to 'Professional eXG' then please do contact the Editor via the diet and health 'Contact us' link.

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

Three abstracts of Coeliac UK research projects - the Dietitians' Survey, the Membership Survey and the Threshold Research Project have been accepted for inclusion in the Symposium. The abstracts will be displayed as posters and the findings of the Dietitians' Survey and Threshold Research Project will be presented at the symposium as well. Sarah Sleet (Chief Executive) and Norma McGough (Head of Diet and Health) are set to attend as representatives of Coeliac UK and will also be attending the workshop "Novel research strategies on treatment and prevention of Coeliac Disease" of the European Commission (EU) project on coeliac disease (CD) CDEUSSA. The workshop is planned at the 12th of November 2006, New York, USA (right after the XII Celiac Disease symposium).

CDEUSSA is an operational European Multi-stakeholder Platform of experts on CD from crosscutting areas, including industry, nutritionist, basic researchers, clinicians and representatives of patient associations. You will find more information on the website: www.cdeussa.com

First announcement of the International Symposium on Gluten Free Cereal Products and Beverages to be held in Ireland on 12-14th September 2007.

This Symposium aims to bring together researchers working in the field to review the state-of-the-art in this topic and to stimulate discussion and collabaration. One outcome of the Symposium will be a book summarising the current knowledge and identifying future research needs.

For further information, including a provisional programme and details on how to submit an abstract, please follow this link to www.glutenfreecork2007.com