Coeliac UK has recently launched a new database that we hope will allow us to deliver a better service and to develop better relationships with our members. As part of this change we are also creating a special 'members only' area of the website.

We want to continuously develop the content available to HCPs on our website, in conjunction with our medical experts and advisors, and welcome your comments and feedback.

Are there any subjects/topics that you feel are missing or feel needs updating on our website? If so, do let us know your comments by clicking on the 'contact us' the link above. When filling out the online form, select 'diet and health enquiry' and entitle your email 'Prof eXG'.

We are also planning on launching a new resource listing restaurants, hotels and other eateries. Members of Coeliac UK will be able to upload venues directly onto the site and we hope this will build to give all our members a valuable resource when it comes to eating out.

Subscription to our 'Professional eXG' publication is not currently a membership benefit - although we are looking into this- so do let your colleagues know that they can sign up via our website to receive their copy.

Coeliac UK has won its bid as part of a consortium of patient groups and researchers for a £500,000 grant over three years from the Health Foundation, looking at developing best practice in primary care and transfer to secondary care for dealing with coeliac disease, IBS, IBD, and GORD.

This research will provide a real opportunity to improve diagnosis rates and the overall management of the condition. 

The research will play an important role in helping Coeliac UK achieve one of its new strategic aims of "improving the recognition of the condition by healthcare professionals and ensuring subsequent management is of high quality".

A key aspect of the project will be the importance of spreading best practice guidelines throughout the NHS.  Two GPs will be selected to act as 'champions' in their PCT area to engage with other practices and encourage them to apply the guidelines.  The impact of the adoption of the guidelines will be evaluated subsequently and, if successful, promoted to the NHS as a whole.

Norma McGough, Head of Diet and Health and Sarah Sleet, Chief Executive, attended the XII International Coeliac Disease Symposium 2006 in New York as representatives of Coeliac UK. 

There were nearly 2000 delegates over the course of the 3-day conference including patients from the US with coeliac disease and representatives from over 30 different countries covering every aspect of adult and paediatric coeliac disease - diagnosis, treatment, science and public policy. It was a really great forum for networking within the international coeliac community.

There were two main parallel sessions - scientific and clinical and there was also an exhibition of manufacturers and pharmaceutical companies and a poster exhibition throughout the conference. There was a great deal of discussion about methods of diagnosis and the quality of life aspects of living with coeliac disease. There was a consensus view that more information about the impact of diagnosis at different stages of the disease is needed.

Three abstracts of Coeliac UK research projects - the Dietitians' Survey (which has been submitted for publication in the JHND), the Membership Survey (completed in conjunction with Ipsos Mori) and the Threshold Research Project (funded by the FSA) were included in the Symposium. The abstracts were displayed as posters as part of the conference.

A systematic review has been recently published by researchers that questions the evidence base surrounding the recommendation of oats in a gluten free diet.

N Y Haboubi et al Postgraduate Medical Journal 2006; 82: 672-678

Dr William Dickey, member of the Medical Advisory Council of Coeliac UK writes:

''Concerns are still expressed about their safety in coeliac disease and many coeliac societies are reluctant to endorse their use.

This review included six studies, three sharing authors, which compared patients on a strict gluten free diet (GFD) with those on a GFD with oats. The most common reason for study exclusion was lack of comparison of patients on a GFD containing oats with those on a strict GFD. In fact, there are many linear studies where biopsies are compared in the same patients before and after oats, which are valid and should be included in any analysis on the subject.

While no studies included in the review showed a significant loss of villous height in patients taking oats, two did report significant increases in the inflammatory cell (lymphocyte) counts in follow-up biopsies. Coeliac antibody levels in the blood returned to normal equally in strict GFD and GFD-oats patients.

I feel the authors' interpretation of the data is perhaps unduly alarmist. They raise concerns about significant complications like cancer which we know are much less common than previously believed, even in untreated patients. The significance of persisting lymphocytes in the biopsy is uncertain. The authors state that many patients with normal villi and raised lymphocytes will progress to full villous atrophy: this is certainly true for untreated patients, but we know that patients on a full GFD who are doing very well clinically often have persistent lymphocytes even after some years, after the villi have grown back.

The researchers state that oats should be only introduced if the patient is undergoing lifelong specialist review: this should be the routine standard of care in any case. While a follow-up biopsy after taking oats may be prudent, their proposal that this is done regularly (presumably annually) seems unnecessary. A minority of coeliacs are intolerant of even pure oats: careful monitoring of symptoms, blood tests and infrequent biopsy will identify these and should not be a reason for restricting the majority. It also seems reasonable to avoid oats in patients with persisting villous atrophy despite a strict GFD.

Quite rightly, many are worried about contamination of oats by wheat, barley and rye. New techniques allow the accurate assessment of foods for gluten content. Coeliac UK provides information in the food and drink directory on oat products which are free from contamination.

Oats, at relatively low cost, add fibre content and welcome variety to the GFD. Consuming oat products which are guaranteed to be free from contamination increases food choice, can help to improve compliance to the GFD and are safe for most people with coeliac disease.''

Peraaho M et al. 'Oats can diversify a gluten-free diet in celiac disease and dermatitis herpetiformis'. Journal of the American Dietetic Association 2004; 104: 1148-50. This paper from Pekka Collin's group describes Finnish patients' experience with the oat-containing GFD.

Coeliac UK would refer any individual enquiry about the suitability of including uncontaminated oats in a GFD to refer to their health care team for specific guidance based on their own sensitivity and ongoing management.

Few recent studies have examined the distribution of body mass index (BMI) in coeliac populations and its relationship to clinical characteristics, or its response to treatment.

Patients newly diagnosed with coeliac disease (confirmed by duodenal biopsy) over a 10 year period (November 1995-October 2005) were reviewed. In total 371 patient records from a database were examined; BMI measurements and other clinical and pathological characteristics were noted.

The results showed that the mean BMI in this group was 24.6 kg/m² (range 16.3- 43.5). Seventeen patients (5%) were underweight (BMI <18.5), 211 (57%) were in the normal range, and 143 (39%) were overweight (BMI greater or equal to 25). Out of this group of 'overweight' patients, 48 (13% of all patients) were classified in the obese range (BMI greater or equal to 30).

There was a significant association between low BMI and female gender, history of diarrhoea, reduced haemoglobin concentration, reduced bone mineral density (BMD), osteoporosis, and higher grades (subtotal/total) of villous atrophy. Of patients compliant with a gluten free diet, 81% had gained weight after 2 years, including 82% of initially overweight patients.

The researchers conclude that few coeliac patients meet the underweight stereotype at diagnosis and almost half are overweight. Failure to recognise this undoubtedly contributes to failed and delayed diagnosis, particularly as other 'classic' symptoms such as diarrhoea are less common in heavier patients. 

The increase in weight of already overweight patients after dietary gluten exclusion is a potential cause of morbidity, and the gluten-free diet as conventionally prescribed needs to be modified accordingly by Dietitians.

Dickey W and Kearney N American Journal of Gastroenterology 2006; 101: 2356-2359

Some patients with untreated coeliac disease are negative for serum endomysial autoantibodies (EmA) targeted against transglutaminase 2 (TG2).

The aim of this study was to evaluate the clinical and histological features of EmA-negative coeliac disease, and to examine whether EmA- equivalent autoantibodies against TG2 can be seen in the small bowel mucosa when absent in the serum.

Serum EmA was examined in 177 biopsy-proven specimens from adult patients with coeliac disease. Patients with selective IgA deficiency were excluded. Twenty patients with intestinal diseases served as non-coeliac controls, 3 had autoimmune enteropathy with villous atrophy.

Clinical manifestations, small bowel mucosal morphology, intraepithelial inflammation and TG2-specific extracellular immunoglobulin A (IgA) deposits were investigated in both seum EmA-negative and EmA-positive patients.

The results showed that of the 177 patients with coeliac disease, 26 (15%) had negative serum EmA, 4 of which were IgA deficient. Thus 22 patients with IgA-competent coeliac disease were negative for serum EmA. Three of these EmA negative patients with coeliac disease were found to have enteropathy-associated T cell lymphoma (EATL). 

Among EmA- negative patients with coeliac disease, 13 (59%) were men and the median age was significantly higher compared to EmA-positive patients. Abdominal symptoms (described as diarrhoea, flatulence, indigestion, abdominal distention and pain) were significantly more common in the EmA-negative group.

All EmA-negative patients with coeliac disease, but none of the controls, had gluten dependent mucosal IgA deposits alongside TG2 in the small bowel mucosal specimens.

The researchers conclude that negative serum EmA might be associated with advanced coeliac disease. TG2-targeted autoantibodies were deposited in the small bowel mucosa even when absent in the serum. This finding can be used in the diagnosis of seronegative coeliac disease when the histology is equivocal. It may also be helpful in the differential diagnosis between autoimmune enteropathy and coeliac disease.

Salmi TT et al Gut 2006; 55: 1746-1753

The systematic review of the evidence available on gluten-free threshold levels has been completed and the final report has submitted to the Food Standards Agency.

The aim of the study, funded by the FSA and project managed by Coeliac UK, was to determine whether there is sufficient evidence to support a threshold dose or level of gluten in gluten-free foods that can be tolerated by all people with coeliac disease and to assess the robustness of the evidence base for the current Codex standard for gluten-free wheat starch products (a maximum of 200ppm gluten).

The results reveal that the current Codex standard of 200 ppm is not sufficiently protective for all people with coeliac disease and so there may be a case for lowering the current maximum level of gluten permitted in gluten-free foods.

However, there is not the evidence available to support a single definitive threshold level of gluten in foods that would be tolerated by all patients with coeliac disease. Most people with coeliac disease include gluten-free products containing codex wheat starch in their diets and remain healthy.  Reducing the standard may restrict availability of GF product ranges and potentially affect compliance to the gluten free diet.

It is likely that it is the total amount of gluten ingested, rather than the concentration of gluten in the food products that is important. Another factor to consider is that, the higher the level of gluten allowed in 'gluten-free' substitute foods (i.e. the Codex standard), the greater the amount of gluten that an individual will consume, because of the additive effect.

Key outcomes of the systematic review: 
• There is not enough evidence available to support the current Codex standard of 200ppm so this level would appear not to be sufficiently protective for all people with coeliac disease.
• Results from the studies reviewed suggest that some patients exhibit symptoms at much lower doses of gluten than others.
• A daily consumption of 200mg or more of gluten clearly induced mucosal changes and/or symptoms.
• There is not enough evidence available to be able to derive a specific threshold dose that would be tolerated by all people with coeliac disease.

These findings were submitted to the Codex meeting in Thailand in Oct -Nov 2006 and there will be further discussion at international level on the Codex standard for gluten-free labelling purposes. For further information on the recent Codex meeting refer to http://www.codexalimentarius.net/web/archives.jsp?lang=en

In the October newsletter we mentioned that Coeliac UK has commissioned the Health Economics Research Centre, University of Oxford to take a closer look at the costs associated with coeliac disease.

One part of this work involves a survey of members of Coeliac UK, to find out more about health status before and after diagnosis, the impact of coeliac disease on household costs, the take-up of prescriptions, and the length of time getting diagnosed.

About 2000 questionnaires were sent out and we are pleased to say that about 800 have been returned so far. We will be reporting the full results in due course, but it is already clear that many people endured symptoms for long periods before coeliac disease was finally diagnosed; that these symptoms had a significant effect on quality of life, which typically improved substantially after diagnosis; and that the availability of prescription foodstuffs does not prevent members from incurring some often quite hefty out of pocket costs as a result of coeliac disease.

If your patients were sent a questionnaire but have not yet got round to returning it, please encourage them to complete it and post it in the pre-paid envelope. It is not too late!

We mailed out 2,000 questionnaires to a sample of our membership in November 2006 and we are currently in the process of inputting data.

An initial look at the rough data (~50% response rate) suggests there are some interesting responses that show that our members are eager to gain more information on food labelling and the gluten-free diet in general. There are also indications that people spend more money on food once on the gluten-free diet despite accessing gluten-free foods on prescription. Coeliac UK is a key source of food information.

We plan to produce a report in 2007 and may try to extend the survey to non-members. We will keep you informed of our progress.

Coeliac UK wants to help provide a discussion forum between health care professionals working in the fields of coeliac disease management, education and/or research. 
 
If you have been involved in, or know of, any innovative 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.

The Annual Scientific Meeting of the British Society of Gastroenterology is to be held March 26-29th 2007 at the Scottish Exhibition and Conference Centre (SECC), Glasgow.

For further details including how to register and to view a provisional programme, please follow the link to www.bsg.org.uk

The International Symposium on Gluten Free Cereal Products and Beverages is 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 collaboration. 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