The aim of Coeliac/Dermatitis Herpetiformis (DH) Awareness Week is to raise awareness and generate a better understanding of coeliac disease across the country, as well as raising the profile of Coeliac UK.

This year Awareness Week (14th -20th May) again focuses on the importance of early diagnosis of coeliac disease. Since healthcare professionals play a key role in the diagnostic process and provide ongoing patient support, we are keen to get as many health care professionals as possible involved.

While Awareness Week is the focus of activities, any related activity can start some weeks earlier and can continue for several weeks afterwards. Coeliac UK can provide a number of items to help support your awareness raising ventures, including Coeliac UK pre-diagnosis leaflets, posters, badges and balloons. These are available while stocks last, so put your order in fast! To order please contact Barbara Mayne, Volunteers Assistant, on 01494 796117 or email Barbara.mayne@coeliac.org.uk.

Our diet and health team are planning to repeat last year's success of our live online advice 'question and answer' session. Coeliac UK's team of expert dietitians and diet and health advisors will be on hand to answer any enquiry on any aspect of coeliac disease. Further details of this event will be posted on our website nearer the time.

A full information pack for healthcare professionals describing the aims of awareness week, ideas of how you can get involved, tips on getting publicity and order forms are now available to be downloaded from our website.

Coeliac UK currently provides our publications and Food and Drink Directory free of charge to all our members (both health care professionals and patients). This year's Food and Drink Directory should now have been received by all our members. If you have not received your copy, please contact us.

We hugely value the important role that dietitians play in encouraging patients to join Coeliac UK. We are more than happy to supply one or two directories free of charge to our professional members to use as samples with their patients.

Please note, however, that in order to prevent duplication of information and additional costs incurred, we will no longer be processing bulk orders of directories to dietetic departments.

Coeliac UK produces monthly updates for the directory, so it is important that patients are encouraged to use this service. Ways to update the information are described on page 5 of the directory.

We are getting lots of enquiries about why Mars ® products (such as Mars^TM, Galaxy^TM, Starburst^TM, Bounty^TM, Snickers^TM) are not listed in this years directory despite them previously being suitable for a gluten-free diet. We are in active dialogue with Mars ®, who report that they are undertaking a risk assessment with regards to the gluten-status of their products. We hope to include some products in our directory up-dates once this is completed.

We refer any enquiries about particular products to Mars ® customer services directly, telephone number: 0845 0450042.

The treatment for coeliac disease (CD) is a life-long gluten-free diet (GFD). The aim of this study was to establish the safety threshold of prolonged exposure to trace amounts of gluten.

Forty-nine adults with biopsy proven CD following a GFD for two years or more were recruited to the study. Patients were allowed to consume special GFD products available in Italy, with a gluten level of <20ppm. Whilst adhering to the GFD, patients were randomly assigned to ingest a capsule containing either 10mg, or 50 mg of purified gluten, or 50 mg of cornstarch as a placebo daily, for 90 days.

Before randomisation, patients were evaluated at baseline, which involved clinical examination, dietary interview, serological tests; TTG (tissue transglutaminase) and AGA (gliadin) antibodies and a small intestinal biopsy. After completing the three month gluten challenge, the patients received the same clinical, serological and histological tests as at baseline. Results were compared with 20 control subjects.

Thirty-nine patients completed the study protocol. The background gluten intake (based on average daily consumption and gluten testing of products) from the GFD during the gluten challenge was measured at <5mg/d. At baseline, the median villous height/crypt depth (Vh/Cd) in the small intestinal mucosa was significantly lower and the intraepithelial lymphocyte (IEL) count (x 100 enterocytes) significantly higher in the CD patients than in the 20 control subjects. One patient challenged with 10mg gluten developed a clinical relapse.

After the gluten challenge, the percentage change in Vh/Cd was 9% in the
placebo group; -1% in the 10-mg group and -20% in the 50mg group. No
significant differences in the IEL count or antibody tests were found between the three groups.

The researchers conclude that the ingestion of contaminating gluten should be kept at less than 50mg/day in the treatment of those with CD. They also suggest that these findings should be confirmed by further studies with larger numbers of CD patients.

Catassi et al (2007) American Journal of Clinical Nutrition 85: 160-6

Editor's comment:
The current WHO/FAO codex standard is set at 200ppm or less of gluten. As a rough guide, and assuming that 200ppm = 200 mg/kg, 1000 g of a food product meeting the codex standard would contain 200mg of gluten. Therefore 250g of this food product would provide 50mg.

The main cause for ongoing gastrointestinal symptoms in patients with coeliac disease (CD) established on a gluten-free diet (GFD) is continued or inadvertent gluten ingestion. However, there are also other causes of chronic diarrhoea in patients who are compliant with their GFD. One possible cause is exocrine pancreatic sufficiency.

The aim of this study was to assess whether exocrine pancreatic insufficiency is a cause for persisting symptoms in adult CD patients in comparison with controls. The researchers set out to determine whether pancreatic enzyme supplementation provided symptomatic benefit in coeliac patients with chronic diarrhoea. Two hundred and fifty-nine patients were divided into four groups:
A) Newly diagnosed CD (n = 57)
B) CD patients on a GFD without gastrointestinal symptoms (n = 86)
C) CD patients on a GFD with chronic diarrhoea as defined by British Society of Gastroenterology (n = 66)
D) Patients complaining of chronic diarrhoea where CD had been excluded (n=50)
Groups A-C consisted of patients with biopsy proven CD. Pancreatitic insufficiency was measured by stool levels of faecal elastase -1 (FEl-1), a proteolytic enzyme produced specifically by the pancreas. Those participants with a low FEl-1 level and chronic diarrhoea were offered pancreatic supplementation. Stool habit, stool frequency and body weight, before and after treatment with pancreatic enzyme supplementation were recorded.

The results showed that low levels of FEl -1 was significantly more frequent in coeliac patients with diarrhoea (group C, 30%) compared to the other subgroups (A, 11%; B, 6%) and controls (group D, 4%). In group C, 18 out of the 20 patients with low FEl-1 count had significant improvement in their chronic diarrhoea and subjectively reported improvement in consistency/urgency after pancreatic supplementation. No significant body changes were observed.

The authors conclude that low faecal elastase is common in patients with CD and chronic diarrhoea, suggesting exocrine pancreatic insufficiency. In this group of patients, pancreatic enzyme supplementation may provide symptomatic benefit.

Leeds J.S et al (2007) Alimentary Pharmacolology & Therapeutics 25, 265-271

Undiagnosed coeliac disease (CD) is associated with lower bone mineral density, which is a risk factor for osteoporotic fractures. Despite this, previous research on CD and long-term fracture risk is inconsistent. The aim of this study was to examine the association between CD and fractures.

The researchers used information from the Swedish National Inpatient Register to find individuals with a hospital discharge diagnosis of CD between 1964 and 2003. Cox regression was used to examine the future risk of hip fracture and fracture of any type in more than 13,000 individuals with CD and 65,000 age- and sex matched individuals (without CD) in the general population-based cohort.

The results showed that during follow-up, 1365 first hip fractures and 4847 fractures of any type occurred. CD was positively associated with subsequent hip fracture and fractures of any type. The absolute risk of hip fractures in children with CD was 4/100, 000 person years. Incidence ratios for hip fracture in individuals with CD were around two, both prior to diagnosis of CD and afterwards; this risk remained 20 years after diagnosis of CD. The highest incidence ratios for hip fracture were, however, seen at time of and within two years of diagnosis of CD.

The authors conclude that patients with CD, including children, may be at increased risk of hip fracture and fracture of any type. Coeliac disease may be positively associated with long-term fracture risk.

It is important to highlight, however, that since the individuals in this study were from a hospital based register, this may indicate that they had more active disease than outpatient treated patients. Other potential confounding factors which affect bone mineral density such as smoking, body mass index (BMI), use of bisphosphonates or hormone replacement therapy (HRT) were not able to be considered due to the study design. There was also no means of measuring compliance to a gluten-free diet so it is difficult to assess the level of influence the GF diet has on the risk of fractures.

Ludvigsson JF et al (2007) Alimentary Pharmacology & Therapeutics 25, 273-285

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

January's edition of Professional eXG ('research' section) featured comments about this review from Dr William Dickey, consultant gastroenterologist and member of Coeliac UK's Medical Advisory Council.

Please click here to January's edition to read these comments in full.

We have since been contacted by the leading author of this paper, Dr Haboubi, who has asked us to include some of his response to our article.
Dr Haboubi writes:
• Linear studies were included in our review, but those studies where the histology was not the primary outcome were excluded. All linear case studies were also excluded regardless of their conclusions as otherwise the data could not be analysed.
• Compared to small intestinal histology, serology can be a poorer indicator of gluten exposure and disease activity, since serology can return back to normal well before mucosal healing is established.
• Regrettably, there has been a growing number of specialist practices throughout the UK detaching themselves from reviewing coeliac disease (CD) patients and discharging them soon after diagnosis to a mere annual dietetic review. Even more seriously there is a growing new concept of establishing dietetic led clinics where the active role of the gastroenterologist is rapidly disappearing from future care of CD patients.
• Our systematic review did not categorically conclude that oats are safe or not. Instead we have made the following statement: "We believe it is important that patients are informed of the controversy surrounding oats and helped to make an informed choice whether or not to include oats in their diet".

Editor's comment:
The inclusion of uncontaminated oats in a gluten-free diet is an ongoing area of debate. Coeliac UK would like to stress that the outcome from this review does not change Coeliac UK's position on oats, which is very much in line with the recommendations of this study. We always refer enquiries about oats back to the local health care team for appropriate advice and monitoring.

There are a number of accepted and reliable tools that are available to monitor patients' progress on a gluten-free diet e.g. serological tests, biopsy, change/improvement in symptoms and other blood tests e.g. haemoglobin, serum ferritin, red cell folate and vitamin status. In practice, a repeat biopsy may not be appropriate or practical in all patients. There are guidelines for the follow-up for coeliac disease patients as described by the Primary Care Society of Gastroenterology (PCSG, 2006) and the British Society of Gastroenterology (BSG, 2002).

Based on current evidence, since some patients may react to oats from the outset, it would seem reasonable to start patients on a gluten-free diet free from oats, and if the patient wishes, to re-introduce pure uncontaminated oats at a later date when the patient is symptom free and under supervision of the health care team.

There is no doubt that dietitians play a key role in the life-long management of patients with coeliac disease and DH. Dietetic led coeliac clinics are set up in consultation with specialists, with clear guidance as to when to refer back to a specialist based on clinical need. There is evidence that patients prefer this method of follow-up.

In previous newsletters we have mentioned that the Health Economics Research Centre, University of Oxford has been commissioned by Coeliac UK to take a closer look at the costs associated with coeliac disease, including a survey of members of Coeliac UK. Our thanks go out to the more than 800 people who completed and returned a form. The results are still being analysed, but the initial findings include:
• The average duration of symptoms before diagnosis was 13 years
• During this time before diagnosis, respondents on average had to take 21 days off work as a result of their symptoms. They also spent on average £224 from their own pockets on things such as private consultations, over the counter medications, dietary products and allergy tests
• On average, respondents consulted their GP 13 times about their symptoms before they were diagnosed
• When respondents were asked about their quality of life before diagnosis, on a scale where 0 = worst imaginable and 100 = best imaginable, they gave it a rating of 47. After diagnosis this increased very significantly to 79, which is about average for the whole population.
• After diagnosis, 88% of respondents were getting gluten-free foods on prescription. The average number of prescription items per respondent per month was 10.5, and 13.5 for respondents with more than one person with CD in the house
• The average weekly shopping bill increased by £13 after CD was diagnosed

We will be reporting more detailed results in due course, but these headlines are quite striking. Among other things, they emphasise that more rapid diagnosis would have clear benefits for patients, the NHS and society as a whole.

This one day course is aimed at dietitians who would like to develop their knowledge and skill base in coeliac disease management. It is suitable for any dietitians who see coeliac patients and those who are interested in setting up dietitian-led coeliac clinics.
Venue: The British Dietetic Association, Centre for Education and Development, 6th Floor, Charles House, 148/149 Great Charles Street, Queensway, Birmingham, B3 3HT
Cost: £95.00 (BDA members); £120.00 (Non BDA Members)
Duration: 10 am to 4.15pm
Contacts and registration: If you want to know more about the content of this seminar, please contact: Norma McGough email: norma.mcgough@coeliac.org.uk
To register for this event, please forward a registration form with your payment to the Centre for Education and Development by Monday 25th June 2007. Registration forms are available from the centre ced@bda.uk.com or from the BDA website www.bda.uk.com

Coeliac UK's coeliac disease/DH specialist dietitian Emily Kirk is giving a professional development update talk for dietitians at the Royal Brompton hospital, London on May 10th, 11am-12 noon.

This update is free and there are spaces available for any dietitian wanting to attend. Places are limited so do email emily.kirk@coeliac.org.uk asap to reserve your place!

Coeliac UK is currently organising a conference on December 6th 2007, at Atlantis Suite, Park Inn Hotel, Heathrow, chaired by Professor John Cummings, University of Dundee.

The conference aims to bring together a broad spectrum of key players in the food industry and food service sector to include manufacturers, retailers, quality control and regulation as well as representatives from Food Standards Agency and the chair person of the forth coming CCNFSDU (Codex Committee on Nutrition and Foods for Special Dietary Uses) working group of the revision of the Codex standard on gluten-free foods.

The programme of this exciting event has yet to be finalised, but we will provide a comprehensive view of labelling guidance and issues around the Codex standard that are key in the management of the gluten-free diet in Coeliac disease.

The Slovenia Coeliac Society is hosting the 21st annual AOECS (Association of European Coeliac Societies) Conference in Maribor, Solvenia from 13th -16th September 2007. It is anticipated that around 150 experts from all over Europe will attend this medical meeting.

For further information about this event, please click here.

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