The International Celiac Disease Symposium A meeting of the world’s leading scientists and healthcare professionals with a special interest in coeliac disease

The International Celiac Disease Symposium (ICDS) is a meeting of the world’s leading scientists and healthcare professionals with a special interest in coeliac disease. It is organised by the International Society for the Study of Celiac Disease (ISSCD), takes place every two years and the most recent event took place this September, in Paris. Here we bring you the very latest…

It was a jam packed three days covering everything from diagnosis, genetics, ongoing symptoms, the gluten free diet, new therapeutics, patient views and much more in between. 

There was an update on the European Society of Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) guidelines for diagnosing coeliac disease in children and these have since been published. In the next couple of weeks, we are holding a meeting with the British Society (BSPGHAN) to update the guideline in the UK. We will work with BSPGHAN to have a joint guideline published in the UK and promote this to healthcare professionals involved in the diagnosis of coeliac disease in childhood.   

There was great representation from the Home Team at the ICDS! Professor David Sanders, Chair of our Health Advisory Council gave a talk on ‘Will there be a role for endoscopy and biopsy in the diagnosis of adult coeliac disease in 10 years?’ Although there seems to be a move in this direction  there are still some reservations amongst some clinicians. It remains a debatable subject but it is felt that a no biopsy strategy for the diagnosis of adult coeliac disease will come. At our Research Conference this year, Dr Carolina Ciacci gave a talk on a similar subject ‘To biopsy or not to biopsy? That is the question.’ You can watch the video of Dr Ciacci’s talk on our website. The current NICE guideline for diagnosing coeliac disease in adults remains that all adults with a positive antibody blood test require an endoscopy with biopsy. 

Dr Hugo Penny, a member of Professor Sanders’ team, spoke about ongoing symptoms, refractory coeliac disease (RCD) and the importance of having the correct diagnosis and treatment. Dr Penny provided information about the Rare Disease Collaborative Network (RDCN) for RCD, which consists of two specialist centres in the UK, Sheffield and Cambridge. The RDCN has been recognised by the NHS and when needed, will provide additional support to patients and other clinicians in the diagnosis and specialist management of non responsive and refractory coeliac disease. The RDCN will feature in the next issue of our Live Well Gluten Free magazine.

There were a number of talks exploring new therapeutics in coeliac disease and it was encouraging to see how interest has grown in this area. Approx. five new therapies were in development in 2010 but today this has increased to over 25. Some new therapies are being developed for use alongside the gluten free diet and others hoping to replace it. Development of new therapies takes many years as clinical trials are required to determine dosage, safety and ensure the required effect is achieved. Dr Bob Anderson, ImmusanT, reaffirmed the disappointing news that the NexVax2 vaccine trials for people with coeliac disease, had to be stopped and they are continuing to look at the data to decide on next steps - an example of how difficult it can be with setbacks along the way!

From Germany there was research exploring if changes to wheat breeding have had any influence on its gluten content. Gluten consists of gliadins, glutenins, albumins and globulins. They looked at wheat varieties from 1890 to 2010 and concluded that modern wheat does not appear to be ‘Frakenwheat’. 

Moving from food to the Gut! Some species of gut bacteria have been found to breakdown gluten into fragments that may have a toxic effect on the immune system of people with coeliac disease, whilst other species appear to detoxify the gluten. Further research in this area may one day identify probiotics, good bacteria, which may be beneficial for people with coeliac disease. 

Along with ourselves, there was representation from a number of other patient advocacy groups from across the globe; Australia, USA, Israel, Hungary, Ukraine, Austria to mention a few! Marilyn Geller, CEO of the Celiac Disease Foundation, USA gave a talk on the ‘Unmet need in celiac disease – patient views’. From their survey of 5000 people with coeliac disease, 93% of participants said they are interested in a treatment other than the gluten free diet. Our CEO, Hilary Croft, participated in a roundtable looking at the evolving role of patient advocacy groups and how this has changed over the years but there is still more to do and by working together we can have greater success!! Patient advocacy groups were also involved in a poster gallery entitled ‘Supporting the coeliac community’ you can see our poster displaying the work of Coeliac UK.

The next ICDS in 2021 will be held in Italy but the 2023 event is coming to Sheffield! In the meantime we will continue to bring you research updates via our newsletter and website. If you haven’t already, you may want to take a look at our new feature, “Meet the researchers.”