The International Coeliac Disease Symposium 2015: A Twitter Round-up

The 16th International Coeliac Disease Symposium took place in Prague, Czech Republic, on 21st-24th June 2015. Here Alex Gazzola rounds up some of the more interesting talks, sourced from the tweets of the many bloggers and social media users who did such an excellent job of live tweeting from the event using the hashtag #ICDS2015

Key Speaker Points

Day 1, Sunday, 21st June.
The Evolving Planet of Gluten-Related Disorders (sponsored by Schar)

Professor Carlo Catassi opened with How the Diagnosis of Non Celiac Gluten Sensitivity Should be Confirmed. He argued it is a condition of exclusion, obtained after negative allergy tests to wheat, negative coeliac serology and normal intestinal biopsy - and may in fact be better termed non coeliac wheat sensitivity. Around 14% in the UK consider themselves gluten sensitive (self-reported) but only 3.8% of the population follow the gluten-free diet (GFD). Diagnosis is by means of an assessment of the response to the GFD, and the effect of gluten reintroduction. Baseline symptoms should be measured. A double-blind placebo-controlled gluten challenge ? a one week challenge, a one week GFD, a one week challenge - is implemented. A variation of at least 30% of one key symptom between the gluten and the placebo challenge indicates a positive result. The diagnostic protocols are given in the The Salerno Experts’ Criteria. “We need to take a step forward, away from self-diagnosis,” he argued.

Professor Umberto Volta followed with Biomarkers for Non-Celiac Gluten Sensitivity. Volta argued that lack of biomarkers is a major stumbling block to the proper diagnosis of NCGS. But this work only began in 2011, and the diagnosis tools for coeliac disease in terms of biomarkers were worked on for 30 years - IgG anti-gliadin antibodies are found in 56% of NCGS patients - and they generally disappear on the GFD (not the case in 40% of coeliacs). Although these are neither specific nor highly sensitive, they can be used to contribute to a diagnosis. Zonulin levels appear higher in NCGS patients, and there is some evidence to suggest NCGS can develop into CD, although an Italian study showed 2/3rds of patients with NCGS are negative for the HLA DQ2/8 genes which are always present in coeliacs. In the absence of biomarkers, NCGS remains a diagnosis of ‘exclusion’.

Dr Michael Schumann’s talk was Diagnostic Study of HLA-DQ2 typing for Gluten Sensitivity in IBS Patients. Many IBS patients negative to CD genetic typing derive benefit from the GFD, was his key point. Dr Luca Elli’s talk was Gluten and Functional Gastrointestinal Disorders: is it worth the challenge? NCGS implies a gluten-triggered mechanism, but it could be FODMAPs. It could also be placebo effect in a change of diet. Using a gluten challenge is confounded by the fact that wheat has trigger molecules other than gluten. Using gluten capsules is problematic as many have to be taken daily (at least a dozen), and non-compliance leads to inaccurate results. Yet using muffins or snack bars as delivery vehicle is problematic in that the patients may work out whether gluten is being consumed. One study of 902 IBS patients found 276 to be sensitive to wheat, not gluten.

Professor Alessio Fasano spoke on Gluten and Gut-Brain Axis: Lesson Learned From Autism and Schizophrenia. Gut issues can affect the brain - and vice versa. The early years are key: you are better off if delivered vaginally, have good early nutrition, no infections and no antibiotic treatments. Gluten’s impact on the brain of coeliacs can include seizures, ataxia, memory loss, depression, ADHD, anxiety and autism. IgG anti-gliadin antibodies are higher in children with autism, and these reduce on a GFD. The impact on the brain of gluten, outside of CD, is an exciting area of research.

Dr Elena Roslavtseva spoke on Coeliac Disease and Gluten Related Disorders in Russia and Former Soviet Republics. The first diagnoses were only made in these countries in the 70s and 80s, and diagnosis rates remain extremely low. Blood serology is unavailable in much of Russia, and patients must pay for lab tests. Russian cuisine is rich in gluten, there is poor understanding of the GFD, and children are at risk of social deprivation. Gluten need not be declared on either food or medical labels. In Uzbekistan, only 400 diagnoses are confirmed in the whole country, and only one clinic is able to undertake them. In Belarus, barely 150 patients are diagnosed - though children do get a ‘disability pension’. In Georgia, medical insurance does not cover biopsies, so the GFD is prescribed following a positive blood test. Luckily, corn bread, chumiza (a millet) and buckwheat are common Georgian foods. There is a better picture in Latvia, where 1500 are diagnosed and blood, gene and biopsy testing are all available. The Estonian Coeliac Society has only 43 coeliac members.

Day 2, Monday 22nd June
Patients’ Forum

Hertha Deutsch, Austrian Coeliac Society, spoke on Coeliac Disease, Codex and Legislative Aspects in EU. She reminded delegates that in 1988, declaration of compound ingredients (less than 25%) was not required, and wheat gluten did not need to be labelled if used as a food additive. It was an Austrian request in 1991 to improve labelling with regard to gluten which was accepted by Codex Alimentarius Commission, and this was considered through the 90s. In 1999, the Codex standard for gluten was adopted, specifying that cereals containing gluten should always be declared. In 2008, the Codex agreement on ‘gluten free’ ? to mean less than 20mg/kg (or 20 parts per million) ? was intrdouced.

Martin Kubik of the Czech Agriculture and Food Inspection Authority spoke on Gluten Free Food, Testing, Methods of Analysis. He explained that the Authority test up to 170 foods with gluten free claims annually. In 2014, 4.8% failed, testing above 20ppm. He blamed poor practices and failure to check sources of ingredients, though pointed out that some producers believe ‘traces of gluten’ are acceptable at any levels, so long as gluten is not an ‘ingredient’.

Dr Bianca Rotsaert, MD of Netherlands’ Coeliac Society, spoke on Patient Organisations in Europe, outlining how they began as self-help groups, developed into ‘information desks’ and now have become larger ‘centres of knowledge’, boasting dietitians, GPs, spccialist gastroenterologists, retailers, caterers and policy makers. “Patient organizations should be havens for genuine, checked information,” she said.

Sarah Sleet, Coeliac UK, spoke on Assuring Safety in the GF Diet to Improve Patient Outcomes. Up to 80% of coeliacs admit to at least occasional cheating on the GFD. Challenges include nutritional adequacy, identifying safe products, cost, availability. The South Asian community in the UK has particular difficulties with adherence. GF food is widely available in North America, Europe and Oceania, but much less so in South America, Asia and Africa. There is significant incidence of CD in North Africa, but finding substitutes is tough. Consumers love certification, said Sleet - it’s the prime way of identifying safe products.

Dr Alina Popp spoke on Coeliac Disease in Children, and emphasised that a trial GFD should never be tried on an undiagnosed child - this may delay diagnosis for “many, many years”.

Tuesday 23rd June
Clinical Forum

Dr Katri Kaukinen, Finland, spoke on Skin Manifestations of Coeliac Disease. He began by stating the incidence of dermatitis herpetiformis (DH) is decreasing, despite the increase in the prevalence of CD. This may be because diagnosis of CD is happening earlier, reducing exposure to gluten in those susceptible, reducing likelihood of DH manifesting. The prevalence of DH among coeliac patients varies - 13% in Finland, 8% in the UK and US, 4% in Italy. There is an overall good prognosis for those with DH - bone disease is mild compared to those with CD symptoms, although the slight increased risk of lymphoma is still there. A non-DH skin manifestation of CD is alopecia areata: in patients with this condition, CD has been found to be higher than the general population. Vitiligo (reduced pigmentation) also appears linked to CD. A large Swedish study found 1.4% of coeliac patients have psoriasis - though the research is mixed on whether the GFD can help psoriasis. 2.3% of coeliacs have atopic eczema - again, it is uncertain whether the GFD can benefit this. Chronic urticaria is another possible manifestation of CD, though in a 2013 study, only 0.3% of coeliacs had this condition.

More information
We have omitted many of the presentations from the symposium, and these included those talks by speakers who have given them at other conferences from which we have already reported, or concerning subjects we have previously covered on this site. Follow the links below to learn more.

* For information on the ESPGHAN criteria for CD diagnosis, click here.
* For information on the PreventCD study, click here.
* For information on NCGS and neurological gluten-related disorders, click here.
* For information on novel drugs and therapies for CD, click here.

We’re happy to extend thanks and acknowledgement to the following as sources of most of the information in this round-up:

@CCAceliac especially, but also @CeliacMama2, @TheCeliacMD, @NatRevGastroHep, @CeliacDoc and @AntiWheatGirl.

The 2017 International Celiac Disease Symposium will take place in New Delhi, India, September 8th-10th, 2017.

Published June 2015

Click here for more articles on the causes of coeliac disease.

If you found this article interesting, you will find many more general articles and research reports on coeliac disease here, and lots of information on the management of coeliac disease here.
You can also find articles and research reports on gluten intolerance here and articles on a wide range of other digestive conditions here.

For hundreds of gluten free foods see our freefrom food section here, and for nearly 800 gluten-free recipes see here.

And if you would like to get our FREE fortnightly e-newsletter with new products, recipes, articles and all the latest news from the allergy and freefrom world, just sign up here.