A nationwide survey of registered dietitians has been published in October's edition of Journal of Human Nutrition and Dietetics. This issue focuses on coeliac disease, and also includes articles looking at the economic burden of coeliac disease and the perspectives of those living with a gluten-intolerant person.

The project aimed to assess the level of dietetic services for coeliac disease management in patients with coeliac disease in the UK.  Questionnaires were sent by email to dietetic departments in the UK via the Regional Managers Group of the British Dietetic Association (BDA). Questions were answered by the dietetic manager and the dietitian with the main responsibility for the management of patients with coeliac disease within the department.

The results were compared to the management guidelines recommended by the British Society of Gastroenterology (BSG, 2002).

The study found that there is wide variation in dietetic provision for patients diagnosed with coeliac disease in the UK, and that the current level of dietetic provision is in the region of one-third of what is required according to the BSG management guidelines to provide diagnosed coeliacs with basic support and annual review.

The four factors shown to affect the provision of service most strongly are the number of FTE dietitians per 100,000 population (suggesting a generally higher level of staffing), attendance at joint Coeliac UK & BDA training of a team member, working as part of a multi-disciplinary team and a team member being a professional member of Coeliac UK.

Other than staffing, it is suggested that the increased level of provision provided by departments fitting one or more of the other factors listed is due to an increased understanding of the complex nature of coeliac disease.

Based on the current estimated 1 in 8 cases of coeliac disease being medically diagnosed (Van Heel, D & West J, 2006), there is a growing need for increased provision of dietetic services, in order to ensure that patients with coeliac disease receive a minimum standard of care.

McGough N et al; A survey of provision of dietetic services for coeliac disease in the UK. Journal of Human Nutrition and Dietetics 2007 20 (5), 403-411

The BDA is currently developing their post-registration course programme for 2008. Coeliac UK is keen to build on the work already started with the BDA on courses on coeliac disease management, and we would like to be able to reach more dietitians.

In order to be able to achieve this, we are planning to roll out a post-registration training model in conjunction with the BDA to dietitians at local level. 

If you have an interest in coeliac disease and would like to work with Coeliac UK and the BDA during 2008, then please contact Nicky Mendoza at nicky.mendoza@coeliac.org.uk

At our AGM on July 7th, Rosemary Hoyle, Chair of the Board of Governors, outlined the charity's plans, following extensive consultation, to put the issue of introducing a membership fee for Coeliac UK to a vote of its membership.
 
This follows a huge rise in membership (now about 80,000 members) and the continued decline in the percentage of members donating to the charity; from over 70% of the membership donating in 2000, to just under 40% in 2006.
 
The introduction of a small annual fee will help provide a far more secure income base and safeguard the future of Coeliac UK. A special feature on this subject will be included in Autumn's edition of Crossed Grain.

Below you will find details for the proposed level of membership fees.

Individual*:   £20.00
Concession**:  £10.00
Family / Household***: £25.00

*Adult or Child
** Concessionary rate applies to full-time students, registered unemployed and pensioners whose main source of income is the state pension.
*** Family / Household includes membership for households which contain more than one person diagnosed with coeliac disease or DH, entitling the family / household to receive multiple copies of Crossed Grain, the Food & Drink Directory and voting rights.

Coeliac UK Governers have been concerned to make the levels as inclusive as possible and we hope they should be affordable for all patients.  But where people might struggle to pay we will always be willing to be flexible.

The final decision is to be made by our members. All current members will receive the opportunity to vote on the introduction of a membership fee either at a special meeting in London on Saturday 10th November, or by using the postal ballot paper that will be sent out with the Autumn edition of Crossed Grain.

There are no plans to introduce membership fees to healthcare professionals at this stage.

Coeliac UK is pleased to announce that a sample copy of our latest publication is now available to our professional members. Please click here to join Coeliac UK as a professional member.

'Moving on: A practical guide for young adults with coeliac disease', is an 8 page A5 booklet aimed at 16-21 year olds.

Topics discussed include catering (both at home and out & about), annual check ups, prescriptions, food labelling and balanced eating.

Professional members can contact us via email or phone our helpline (0870 444 8804) to be sent their copy. For emails, please clearly indicate 'Moving on booklet'.

A well known spelt producer is reported to have dropped its literature describing spelt as 'wheat-free' and 'may be suitable for people with coeliac disease'. 

This follows involvement from both Coeliac UK and the Trading Standards Agency.

Spelt was also recently mentioned on BBC's 'Saturday Kitchen' programme by one of the guest chefs as being suitable for those on a gluten-free diet.

Following Coeliac UK's intervention, a correction has been placed on the BBC's website. 

Coeliac UK has been working with the Food Standard Agency and Trading Standards Officers in order to clarify the position on spelt. Spelt is listed in the EU wide food allergen labelling directive as a gluten containing cereal.

We would like to stress that spelt is an ancient strain of wheat and is not gluten-free.

Spelt is not suitable for people with coeliac disease/DH.

Coeliac UK's dietitian Emma Merrikin wrote an article: '15 things you might not know about coeliac disease' which appeared in September's edition of the Primary Care Society of Gastroenterology's Journal 'Gastroenterology in Primary Care'. This publication is available in pdf format via the PCSG website.

Dr Sohail Butt, a member of the Coeliac UK Medical Advisory Council and GP with a special interest in coeliac disease, was published in GP Magazine in September.  His article on 'Making a diagnosis of coeliac disease' discussed the diagnosis and management of the condition. 

Recently on the BBC's 'The One Show', there was a feature on bread making which claimed that if you made bread and let it rise for 24 hours it would have a lower level of gluten.
 
This follows on from the story in eXG recently (see below):
 
On 5th August, The Food Programme on Radio 4 had a feature on baking which created a large response from our membership.  Andrew Whitley, baker and author of 'Bread Matters', said that gliadin (the 'gluten' in wheat) can be neutralized by long fermentation in the presence of lactic acid bacteria (lactobacillus). 
 
Coeliac UK position: the evidence available showing that a long fermentation breaks down the gluten in bread is interesting, but limited. There needs to be more research in this area.  We have contacted Mr Whitley directly about this issue. Currently, it is not possible to buy this type of bread anywhere, as the long fermentation needed makes its production impractical. 

Currently the only bread which is safe for the consumption of people with coeliac disease is that which is made from gluten-free ingredients.

Following a gluten-free diet involves excluding many staple foods such as breads, cereals, pasta and flour which provide important sources of nutrients such as energy, carbohydrate, protein, non-starch polysaccharides (NSP) and B vitamins. As these types of foods tend to be eaten with other, calcium and iron rich foods, intake of these nutrients may also be compromised. The existing literature examining the possible impact of a gluten-free diet on nutritional adequacy of the individual's diet as a whole is limited and inconsistent.

In this study, a hundred and six adult patients were invited to participate via post. Subjects were asked to complete a three day unweighed food diary and a questionnaire that looked at purchasing trends of specialist gluten-free products.

The results on nutritional intake were compared to a control group using data from the National Diet and Nutrition Survey (NDNS).  Forty-nine patients returned the food diary, giving a response rate of 46%.

Patients with CD were found to have a significantly lower proportion of energy from fat compared to the DRVs. Nutrient intake was similar between the two groups of patients, except those with CD had a significantly higher intake of protein and a lower intake of fat.

Of note, a significant number of people with CD (95%) were not meeting the recommended amount of calcium (1500mg/day).  In addition, a significant number (98%) also had intakes of NSP below the recommended average intake of 18g/day, and this was comparable with values for the general population.  No patient with CD met the RNI for vitamin D. There was no significant difference between mean daily intakes of iron between those with CD and the general population.  All but three patients reported receiving gluten-free products (GFP) on prescription.  Due to this low number, it wasn't possible to compare dietary intake data or purchasing patterns with those getting food on prescription.

The authors conclude that patients with CD are at risk of having inadequate intakes of calcium, NSP and vitamin D.  Specialist GFP, obtained on prescription, helped patients get a balanced diet and without these patients would be at increased risk of many deficiencies.   A limitation of the study would be that misreporting or potential modification of diet during the assessment phase.

This study highlights how dietitians have a key role in the management of those with CD and DH.  Not only do patients need advice on replacing GF foods with suitable alternatives, it is also important to ensure patients are eating a well balanced gluten-free diet in line with healthy eating recommendations. Attention to nutrients such as calcium, fibre and iron are of particular importance.

Kinsey L et al; European J Clin Nutr (advance online publication) 2007, 1-10

Susceptibility to coeliac disease (CD) is related to the presence of distinct HLA-DQ heterodimers DQ2/DQ8. The aim of this prospective study was to define the performance of serological testing and HLA-DQ typing in the diagnosis of CD.

463 patients referred to a gastroenterology centre, for testing for coeliac disease (based on presenting symptoms) were included in the study.  All patients were on a normal diet at time of testing.  Small bowel biopsy specimens were obtained from all participants; IgA antibody tests - anti tissue transglutaminase (TGA), anti-endomysial (EMA) and antigliadin (AGA) - and genetic (HLA typing) tests were then performed on blood samples.

Sixteen out of the 463 participants were diagnosed with CD (prevalence of 3.46%). A positive result on both TGA and EMA had a sensitivity of 81%, specificity of 99.3% and negative predictive value of 99.3%. Testing positive for either HLA-DQ type maximized sensitivity (100%) and negative predictive value (100%); whereas testing negative for both HLA-DQ types minimized the negative likelihood ratio and post-test probability (0).  A positive genetic test result did not always mean that a person had coeliac disease.

The results showed that IgA TGA and EMA testing were the most sensitive serum antibody tests and a negative HLA-DQ type excluded the diagnosis.  However the addition of HLA-DQ typing to TGA and EMA testing, and the addition of serological testing to HLA-DQ typing, did not change test performance compared with either testing strategy alone. 

Neither the antibody test nor HLA-DQ typing is a substitute for an intestinal biopsy. The findings of this study highlight the possible complementary role that HLA-typing may have in excluding coeliac disease in challenging circumstances such as discrepancies in serological and histopathological results, or refractory symptoms despite a gluten-free diet.

Hadithi M et al; Ann Intern Med. 2007; 147:294-302

Coeliac UK, in conjunction with Trading Standards, undertook a small research project to evaluate the cost of gluten-free products in comparison with gluten-containing foods.

Food cost data was collected by regional Trading Standards Officers, from a range of supermarkets and this data was analysed to determine if there was any statistical differences in cost across a range of food products.

Gluten-free staple foods were significantly higher in cost, on average three times the price of the standard gluten-containing staple foods. For comparisons of all foods, please see Figure 1.

Out of the 18 products compared, only one gluten-free product (pizza) was cheaper than the gluten-containing equivalent.

Factors which could affect the cost of gluten-free products include the increased cost of gluten-free flours and increased production costs due to both testing of products and methods to ensure high quality assurance involved in gluten-free food production.

Although the cost of specially manufactured gluten-free foods have been shown to be increased, the impact on the cost of maintaining a gluten-free diet as a whole is difficult to establish due to different ways individuals access gluten-free products and variability in an individual's diet.

The contribution of prescription products on the cost of a gluten-free diet was not looked at in this study.  Further research into this area is needed.

Coeliac UK is working with the Hospital Caterers Association (HCA), which represents all hospital caterers in the UK, to produce a gluten-free diet guide.

We will be involved in disseminating and launching this guidance via the HCA regional meetings and at their annual conference in April 2008. Prior to putting the guidelines together, we will be disseminating a questionnaire via the HCA's regular newsletter, to find out more about how much caterers already know about coeliac disease and the best way we can help them improve their knowledge.

Coeliac UK has also established links with Supplychain, a company that supplies the NHS with food and all other commodities, as well as organising regional catering advisory meetings for training purposes. Norma McGough attended one meeting in May in the South-East to present on gluten-free food in hospitals.

To support people with coeliac disease going into hospital, Coeliac UK is currently co-ordinating a pack to help support individuals at ward level. A pack for dietitians is also being put together and will be ready shortly (date tbc). This will consist of a leaflet for patients and information for ward staff. We are also considering options for distinguishing patients with coeliac disease at ward level.

As part of our ongoing campaign to improve the provision and quality of gluten-free food in hospitals and care homes, we would like to hear from dietitians about their experiences in this area.

If you have any information about gluten-free food provision, whether it be a hospital ward or residential/care home, and would like to share your experience, current practice, or methods employed to improve the level of care to patients e.g. schemes that have worked to improve gluten-free food provision, we would love to hear from you!

Please email Nicky Mendoza at nicky.mendoza@coeliac.org.uk, clearly indicating 'hospital/care home food campaign' in the subject header.

Coeliac UK is involved in a ground breaking research project: Coeliac Disease Management, Monitoring and Diagnosis using Biosensors and an Integrated Chip System (CD- MEDICS).

The overall concept of the CD-MEDICS project is to develop a technology platform for a point-of-care screening device, to be used at primary care level. The screening would involve simultaneous antibody and gene testing (HLA-DQ2 and DQ8 typing), the results of which would be able to feed in directly to a patient's electronic medical record. 

A €12 million grant application has been successfully made to the European Union to support the work and detailed contract negotiations are underway. The project involves a broad collaboration of biotechnology companies and university departments. 

Coeliac UK, along with the European Association of Coeliac Societies, will have the key role in disseminating the results of this project at international level.

There is still time to book your place onto the Coeliac UK organised food conference: 'Gluten-free, the way forward'.

Date: Thursday 6th December 2007
Venue: The Park Inn Hotel, London Heathrow

The conference will include:
• Background on coeliac disease and the gluten-free diet
• Current status on codex standard
• Current allergen labelling guidance
• Significance of gluten-free food provision
• Methodology for gluten-testing
• Differences between coeliac disease and an allergy
• Overview of the gluten-free market
• Case studies

Please follow this link to see a full programme of the day and booking form.   A special discounted rate is available for registered dietitians, although the number of places at this rate is strictly limited - so do reserve your place asap!

Attendence certificates can be provided for CPD evidence. Please contact us prior to the conference to request a certificate.

Annual membership to the Gastroenterology Specialist Group (GSG) of the BDA for the year 2007-8 was opened from 1st September 2007.

For 2008, the Group has several exciting study days planned, covering IBS and the NICE guidelines next spring, and an update on coeliac disease in Summer/Autumn 2008. We are also currently working on consensus statements on Crohn's disease, IBS and coeliac disease.

Any questions or topics can be discussed between members via the GSG committee. In addition we are planning on introducing a quarterly newsletter.

A year's membership costs £15 and every 10th applicant receives free membership for the year. To join or to renew your existing membership, please contact Fiona Elliott, GSG Membership Secretary, at Fiona.elliott@cddft.nhs.uk indicating 'GSG membership' in the subject header.

The next British Society of Gastroenterology Scientific meeting is to be held on 10-13th March 2008 at the International Convention Centre, Birmingham.

Deadline for submission is midnight 6th November 2007

At this meeting there will be symposium on coeliac disease, which will involve speakers from all over the UK talking about different aspects of the condition. This will act as an update for the ~ 3500 gastroenterologists from the UK (both trainees and consultants).

Dr David Sanders, consultant Gastroenterologist and member of Coeliac UK's Medical Advisory Associates will be chairing the meeting, which will involve a presentation from Coeliac UK's Norma McGough and a state of the art lecture on refractory coeliac disease by Dr Chris Mulder.