A recent study, funded by Coeliac UK and the Wellcome Trust, and led by David van Heel, Professor of Gastrointestinal Genetics at Queen Mary, University of London, has identified a new genetic risk factor for coeliac disease.

Exploiting technological advances that have enabled comparison of variations across the human genome in large numbers of people, researchers studied over four thousand individuals with and without coeliac disease, amongst British, Irish and Dutch populations. Genome data on 1,500 British individuals was made available to the study by the Wellcome Trust Sanger Institute. Researchers found that individuals not susceptible to coeliac disease more often have a protective DNA sequence providing defence against intestinal inflammation compared to individuals with coeliac disease.

Professor David van Heel, chief investigator in the study, said; "We previously knew that coeliac individuals had a specific tissue type which recognised wheat proteins. We did not know why healthy individuals who had the same tissue type did not develop symptoms or disease. The first findings from our study suggest that interleukin genes that control inflammation are critical. We expect to find more disease risk factors from further in-depth analysis of the genome wide data."

'A genome-wide association study for celiac disease identifies risk variants in the region harboring IL2 and IL21' Van Heel, D et al; Nat Genet 2007; 39(7): 827-9 

A huge thank you to those of you who supported our successful Awareness Week campaign!

We are keen to hear from those who were involved in Awareness Week activities. Please send us any press coverage you may have received and any photos of your event - send items to our Communications & Volunteers' Manager, Holly Ellicott at holly.ellicott@coeliac.org.uk, marking your correspondence 'Coeliac Awareness Week'.

The profile and awareness of coeliac disease has been given a boost by the press and broadcast coverage due to Coeliac Awareness Week.

Among the highlights the Daily Mirror and Daily Mail reported the Coeliac UK commissioned Health Economics Research Project, carried out by the University of Oxford, that showed that on average people have to wait 13 years to be diagnosed; while the Daily Express featured a full-page including a case study. Information about the need for early diagnosis of coeliac disease appeared on the BBC's news website, and was in the top 5 'most emailed story' of the day.  Case-studies and information about coeliac disease were also highlighted in both national and regional press and a range of magazines.

On TV, GMTV broadcast a feature and interviewed Channel 4 presenter Cesarina Holm-Kander; celebrity chef Phil Vickery featured gluten-free desserts on his slot on ITV's This Morning; and ITV Central News broadcast a news feature and interviewed two case studies. Even the daytime soaps made an effort, and a patient diagnosed with coeliac disease appeared on the BBC soap 'Doctors' wittingly entitled 'Born and Bread!'.

On radio, nutritionist and writer Ian Marber, The Food Doctor, took part in a radio phone-in on LBC; while Phil Vickery and Coeliac UK Head of Diet & Health Norma McGough recorded a series of radio interviews which were broadcast across the UK to over 8.5 million listeners.

The central point of Awareness Week activity was the Coeliac UK organised parliamentary reception, held in the House of Commons, and an exhibition on the following day in Portcullis House.  In total 68 people attended the reception, of these 44 were parliamentarians.  In addition leading gastroenterologists, the President of the British Medical Association, dietitians, some gluten-free manufacturers and Cesarina Holm-Kander also attended.

An Early Day Motion, or EDM, was tabled early in the week by Gordon Banks MP (secretary of our All Party Parliamentary Group) with 6 signatories. This EDM aims to draw attention to coeliac disease and canvasses parliamentary support for the importance of early diagnosis. To date, the EDM has now been signed by 112 MPs.

Coeliac UK has launched a new diet resource: 'Gluten-free living for adults: Keeping Healthy'  - a 24 page A5 booklet which is aimed at people already established on a gluten-free diet who want additional information to help keep themselves healthy. Topics include: 7 steps to healthy eating, food labelling, hypercholesterolaemia, type 2 diabetes, glycaemic index and trans-fats.

Currently this publication is free to Coeliac UK professional members so do contact us for your sample copy.

In addition to this new resource, we have repackaged our current literature into A5 booklets:

•'Gluten-free living for adults: Getting Started', 28 pages; including information on coeliac disease, the gluten-free diet, allergen labelling, prescriptions, cooking and eating out.

• 'Gluten-free living for children, a guide for parents and carers: Getting started', same topics as the adult booklet above.

• 'Gluten-free living for children, a guide for parents and carers: Out and About', 20 pages; including advice for childcare providers, tips for starting school or nursery, packed lunches, special occasions and keeping healthy. 

Our information on dermatitis herpetiformis, osteoporosis, diabetes, pregnancy and weaning remain in the A4 leaflet format. Sample copies are available to professional Coeliac UK members on request.

We have produced a flowchart in conjunction with our Medical Advisory Council (MAC) with the aim to help healthcare professionals know more about the diagnostic procedure for coeliac disease. This is now available to download via our website on the 'diagnosis' section of the health care professional pages; or you can click here to see a copy of our diagnostic flowchart

We are keen to develop our resources further and are currently producing information leaflets aimed at older children and teenagers.

We welcome any feedback from those working with these age groups for suggestions of topics to include. Please contact us and let us know your comments today!

A list of prescribable gluten-free products is available from page 16. Monthly additions and deletions are produced by Coeliac UK every month which are available via the homepage of our website. It is essential that you keep this list updated since new products are often added throughout the year. An up-to-date prescribable list is available via our website; follow this link to see your copy.

So far in 2007, the following have been added to the directory:

• Page 16 PRESCRIBABLE PRODUCTS - BREADS - BARKAT - HOME FRESH PAR BAKED - Bread Rolls, Country Loaf, White Sliced Bread, Baguette

• Page 19 PRESCRIBABLE PRODUCTS - PASTA - BARKAT - Buckwheat Pasta Spirals, Buckwheat Pasta Penne

• Page 21 PRESCRIBABLE PRODUCTS - FLOUR & BREAD MIXES - PURE (Innovative Solutions) White Rice Flour 500g (PIP Code 325-7904), Brown Rice Flour 500g (PIP Code 325-7912), Tapioca Starch/Flour 500g (PIP Code 325-7946), Potato Starch/Flour 500g (325-7920)

After several months campaigning both locally and nationally, Coeliac UK has received a positive response from Northamptonshire PCT stating that it is recommending to its Board to reverse the decision on limiting access to particular types of gluten-free food on prescription.

Instead they are going to recommend taking up our proposal of using the prescription guidelines to determine the quantity of food but allowing patient choice in the type of gluten-free foods chosen. In addition we understand that this would be managed through the community pharmacists rather than GPs.

The aims of this study were to determine whether an active case-finding strategy in primary care could increase the frequency of CD diagnosis and to determine the most common clinical presentations of the condition.

During 2002-2004, any individual over the age of 18 seeking care from their physician in one of the participating primary care based practices were informed of the study by reception staff. Those willing to participate completed a questionnaire and anyone meeting set criteria for being 'at risk' of CD e.g. family history of CD (1st/2nd degree relatives), various gastrointestinal complaints, autoimmune diseases were deemed eligible for the study. All 'at risk' individuals were given information about CD and offered a free blood test. IgA based tTGA were measured, and if positive the samples were then tested for IgA EMA. Those with positive blood tests were advised to undergo intestinal biopsy and HLA typing. IgG tTGA was measured in IgA deficient individuals.

CD diagnosis was considered positive in patients fulfilling at least one of the following criteria:
a) positive IgA tTGA and EMA together with positive small intestinal biopsy
b) positive IgA tTGA and EMA plus HLA typing compatible with CD diagnosis (HLA-DQ2 and/or DQ8 positive) in those refusing small bowel biopsy
c) positive IgG tTGA in IgA deficient individuals plus HLA typing compatible with CD diagnosis as in b).

In total 2568 patients were interviewed for participation; of these 859 did not qualify for the study, 67 declined the questionnaire and 666 were eligible for the study but refused the blood test. 976 patients (38% of the 2568) were eligible and enrolled in the study.

The prevalence of CD in overall screened sample was 2.25 %( 22 out of 976 patients). The most common reasons for screening for CD was bloating, thyroid disease, IBS, unexplained chronic diarrhea, chronic fatigue and constipation. Over the 12 months before the study, only 15 out of 54,988 individuals seen in participating practices were diagnosed with CD (0.27 cases per thousand visits). During the study period, this rate increased to 8.6 cases per thousand visits (based on 2568 subjects in study population); and 11.6 cases per thousand visits (on 1902 subjects - excluding the 666 patients who refused blood test).

The researchers conclude that an active case-finding strategy in the primary care setting is an effective means to improve diagnosis rates of CD. 

Catassi, C et al; Am J Gastroenterol 2007; 102 (7):1454-60

It is established that there is an increased prevalence of coeliac disease (CD) among relatives of those with the disease. The aim of this study was to compare the clinical features in patients with CD detected via family screening with those in patients diagnosed routinely.

From November 1997 to April 2003, patients attending CD clinic were provided with information to give to first and second degree relatives. All relatives over the age of 16 who put themselves forward underwent serological testing: IgA based endomysial (EMA) or tissue transglutaminase (TTG) antibodies. In IgA deficient patients, IgG based EMA/TTG were measured. Those with positive antibodies were encouraged to have a small bowel biopsy in order to confirm the diagnosis of CD.

Clinical presentation and other details were obtained from the medical records of patients diagnosed with CD through relative screening.

All patients had full blood count, thyroid function tests, serum glucose, vitamin B12, folic acid and ferritin measured. DEXA scans were performed 'where indicated'.

In total, 183 relatives (77 males and 106 females) underwent screening. Thirty-two had positive serology and of these 30 agreed to biopsy. Twenty-four of these had abnormal histology and hence were diagnosed with CD. No clinical information was available in one patient who was thus excluded, so 23 patients were included for analysis. Clinical presentation and other details were then compared with information obtained from the medical records of 105 CD patients diagnosed during the same time by routine referrals.

The researchers found that the prevalence of CD among relative was 13%. Patients in the relative screening group were significantly younger (median age of 33 years) compared to the routine group which had a median of 54 years. The screening group contained significantly higher male to female ratio (M: F; 16:8) compared to the routine group (M: F; 35:70).  Thirteen of 23 patients in the relative screening group and 79 of 105 routine patients presented with GI symptoms (diarrhoea, constipation, abdominal pain, vomiting, weight loss). Anaemia was significantly less common in the relative screened group (13%).

The study design meant it was not possible to elicit if patients had previously sought medical advice for their symptoms, and clinical information for those who declined testing was not available. Therefore there is likely to be positive bias in the results since it could be possible that only those relatives with significant symptoms may have agreed to be tested. Seronegative CD would not have been picked up in the study, and the researchers conclude that larger studies are needed to confirm the observed differences.  

Sundar N et al; Postgrad Med J 2007; 83 (978): 273-6

It has been suggested that coeliac disease (CD) is associated with several neurological diseases. However, the evidence is inconclusive due to small sample numbers, retrospective data collection, and in some papers the relationship has been evaluated using levels of antigliadin antibodies rather than clinical diagnosis of CD.

The aim of this study was to estimate the risk of neurological disease in a large national cohort of individuals with CD and matched individuals.

The Swedish national inpatient register (IPR) was used to identify all individuals with a hospital diagnosis of CD between 1964 - 2003. For each individual with CD, up to 5 reference individuals were identified through the Total Population Register (TPR). Reference individuals were matched for age, sex, calendar year and area of residence.

Data on risk of a range of neurological diseases, diabetes mellitus (DM) and lymphoma as defined by the international classification of disease codes (ICD) were obtained from the IPR.  In total 15,533 individuals with CD were identified. 1150 were excluded due to data irregularities and follow up of less than 1 year. In the analysis of MS, 12 patients were excluded as their diagnosis of MS occurred before study entry. Follow up time ended on the date of first discharge, diagnosis of neurological disease, emigration, death or the end of the study period (31st Dec 03), whichever occurred first. Similar exclusion criteria were applied to the reference individuals.

The results showed that CD was associated with a later discharge diagnosis of polyneuropathy, even when potential confounding factors (DM and lymphoma) were taken into account.  There was no statistically significant association between CD and subsequent multiple sclerosis, Parkinson's disease, Alzheimer's disease, hereditary ataxia, the symptom ataxia, Huntington's disease, myasthenia gravis or spinal muscular atrophy. Prior polyneuropathy was associated with subsequent CD.

The researchers conclude that the association between CD and polyneuropathy indicates shared risks. They suggest that patients with polyneuropathy routinely undergo screening for CD. There was no association between CD and other neurological outcomes investigated in this study.

Ludvigsson JF et al; Aliment Pharmacol Ther 2007; 25 (11): 1317-27

Coeliac UK's diet and health team are undertaking a project which aims to understand more about the nutritional composition of gluten-free 'substitute' food products in comparison to their gluten-containing equivalents.

We are also gathering information regarding the manufacturers' policies in respect to fortification of gluten-free products with vitamins and minerals.

We are about to start collecting data, and will report on our progress in due course.

Coeliac UK, in conjunction with Trading Standards, have undertaken a research project to compare the cost of gluten-free products in comparison to their gluten-containing equivalents.

Data has been collected by Trading Standards Officers from a range of retail outlets in the South East region.

A summary of the findings is currently being finalised.

In our January edition of Professional eXG we reported that Coeliac UK, as part of a consortium of patient groups and researchers,  won a 3 year, £521,000 bid from the Health Foundation.

The aim of the IMAGE project is to develop best practice guidelines in primary care and transfer to secondary care for dealing with coeliac disease, IBS, IBD and GORD.

The protocol for the project has now been finalised. Patients' views on good quality practice will be collected by undertaking a series of focus groups, locating these groups in the areas in which the interventions are planned to be piloted and evaluated.  Well connected GPs with an interest in gastroenterology have been selected as  'champions', who will assist in recruiting practices and in introducing the interventions to them and their PCTs.

The conference, chaired by Professor John Cummings from Ninewells Hospital and Medical School Dundee, is the first time that such a distinguished list of speakers has come together to discuss coeliac disease and the gluten-free market.

The food conference is primarily aimed at the food industry and food service sector but will provide a comprehensive overview of the Codex Standard, labelling legislation and the gluten-free market.

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!

The 21st annual AOECS (Association of European Coeliac Societies) conference 'Experts and Coeliacs Under One Roof', is taking place in Maribor (Slovenia) from 13th till 16th of September 2007.

The international Coeliac Disease Meeting has also been organised in conjunction with the AOECS conference.

Many experts with broad knowledge about coeliac disease who investigate many different aspects of the disease will discuss important issues and will prove to be of a great value for all people concerned in helping to provide a better quality of life for people with coeliac disease.

Please follow this link to find out more information about both meetings (including provisional programme).