Coeliacs for Coeliacs
Due to a lack of information and experience, some emerging AOECS Member societies are struggling to provide sufficient support to their own members. This Working Group consists of representatives from established AOECS Members societies that have accumulated substantial experience in the runnning of patient organisations. The aim of the group is to narrow this gap in terms of sharing knowledge and expertise to ensure that coeliac patients across Europe receive the support they need.
Over the past years, AOECS has funded several workshops to achieve this aim led by Tunde Koltai, of the Hungarian coeliac society and our Treasurer, Dan Kühnau, of the German coeliac society.
Managing a gluten free diet at home can be challenging when first diagnosed, but being in control of one's own kitchen means one can ensure that only gluten free ingredients are used. One can also limit any possible cross-contamination with gluten by ensuring that cooking utensils and kitchen work surfcases are cleaned thoroughly.
Eating out in a restaurant or any other catering establishment means that one must depend on the waiting and kitchen staff to be aware of the need to serve and prepare meals that are free of gluten.
This Working Group, led by AOECS Board member Nanna Puntila, is developing standardised check lists and training for catering establishments in our Member societies' countries.
Scientific Advisory List (SAL)
The Scientific Advisory List (SAL) is a panel of medical experts selected to support AOECS’s efforts to reduce the impact of the coeliac and other related conditions. The panel has the authority to make recommendations to the AOECS Board regarding technologies, research projects, programmes, activities and funding.
SAL is currently chaired by Prof Christian Scerri, a specialist on the genetics associated with coeliac disease at the University of Malta. Other members include colleagues from various AOECS Member countries in the fields of cereal and food technology, dietetics/nutrition, epidemiology, gastroenterology, genetics, immunology, pathology, paediatrics and psychosocial aspects.
Gluten Free pricing
In order to stay healthy, coeliac disease sufferers have to follow a strict gluten free diet. Unfortunately, in the vast majority of cases, gluten free versions of staple foods - such as pasta, flour or bread - are still significantly more expensive than their “regular” versions. In some parts of Europe or more remote areas, such gluten free versions may not even be available at all, which can make every day eating a real challenge for people suffering from the disease.
This Working Group, led by our AOECS Board member Susanna Neuhold, therefore aims to assess the availability and cost of gluten-free foods across Europe by collecting and analysing relevant data across different store categories and European countries. The objective is to use this data to support the implementation of an action plan to improve gluten free foods availability and prices across Europe.