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International Celiac Disease Symposium 2013: A round-up from social media and the blogosphere

The 15th International Celiac Disease Symposium took place in Chicago, 22-25th September 2013. Here, Alex Gazzola rounds up the research and news unveiled at the event, courtesy of the bloggers and social media users who did a terrific job of keeping followers and online readers informed during the four days.


A round-up of some of the best post-ICDS blogs around …

Very useful post from Rebecca Black of Pretty Little Celiac on her first-day experiences of the symposium, including snippets on the development of coeliac disease, HLA-DQ2 and –DQ8 genes, the gluten-free diet, osteoporosis, and small intestinal bacterial overgrowth (SIBO) – a possible cause of ongoing symptoms in (especially) recently diagnosed coeliacs.

Also Jess from The Patient Celiac has written an excellent post called Celiac Disease Now, drawn from an introductory presentation from Dr Alessio Fasano and Dr Peter Green, covering a number of fascinating areas, including: the ‘4 out of 5’ rule for coeliac diagnosis, coeliac risk factors in infancy (caesarean section, gluten introduction outside the 4-7 month ‘window of opportunity’, winter-time birth etc), problems with diagnostic biopsies, and much more. 

Good blogs from Amy Leger of The Savvy Celiac and from Erica Dermer of Celiac and the Beast on the ‘Top Celiac Myths’ presentation from Italian gastroenterologist Dr Stefano Guandalini, covering some of the myths and lies that proliferate online about coeliac disease and non-coeliac gluten sensitivity (NCGS).

Some of the truths revealed included: the safety of coffee, the safety of corn, the incomplete effectiveness of current gluten-targeting digestive enzymes, the fact that gluten cannot be stored in the muscle of grain-consuming animals (making grain-fed animal meats gluten-free).

Guandalini also made the very strong point that Italians eat twice as much wheat as Americans, but have only a 6% obesity rate, compared to the 30%+ in the US. Message: wheat does not make you fat! Criticism for Dr Davis’ popular ‘Wheat Belly’ theories was considerable – despite his views that changes in wheat strains have increased cases of coeliac disease, there is no evidence for this, and no GM wheat is currently being consumed, anywhere, worldwide. Guandalini said that he disapproved of cross-reactivity testing (Cyrex tests).

He also observed that we don’t have enough evidence to make conclusions about non-coeliac gluten sensitivity: it may not be due to gluten, might be due to FODMAPs, and we don’t know the numbers of sufferers at this stage.

And finally, an overall summary blog by Amy Leger of The Savvy Celiac again, who found the most valuable information to be about the FODMAP diet and slow gut healing on the gluten-free diet.

Key Speaker Points

Dozens of speakers gave presentations at the ICDS, and what follows is a round up of key points and comments the named experts made during their talks, harvested from various sources – mainly the many excellent Twitter users attending the event …  

Dr Alessio Fasano
Dr Fasano, of the Center for Celiac Research, explained why 20ppm was the right level for ‘gluten free’. He explained that a study in which patients were given a placebo pill, 10mg/kg of gluten or 50mg/kg per day found that those with an intake of 10mg did well, but those consuming 50mg did not. Arguing in favour of 20ppm, he pointed out that consuming 300g of 20ppm food (a considerable amount) would only lead to a total of 6mg gluten – below the 10mg that is tolerable. (Besides, ‘gluten free’ food has to contain less than 20ppm in order to test at under 20ppm, due to the margin of error in testing methods.)

There is no such thing as ‘zero gluten’ in products. He joked that to make a 0ppm loaf of bread it might cost $300 and you’d have to wear a space suit. To protect it from contamination, you’d have to keep it inside a space ship. There is gluten in the environment!

Research shows a very small minority of coeliacs (a maximum of 0.15% – around 1 in 700) cannot tolerate an everyday intake of gluten free rendered food at 20ppm. He said the small quantity (2.3%) of patients he has seen who weren’t responding to 20ppm and were put on a special, natural gluten free diet, could later handle 20ppm food.

Shelley Case, Registered Dietitian
Case spoke about the nutritional problems with gluten-free foods. She said a study comparing GF with non-GF found that 61% of GF food contains lower amounts of B vitamins. A Canadian study found GF pasta to be higher in carbohydrates and lower in protein, fibre, iron and folate than non-GF pasta. 74% of American GF breads are not enriched, 100% of GF waffles are not enriched, and 89% of all-purpose GF flour is not enriched. The vast majority of GF products overall have refined flour as the first ingredient, and 79% are not enriched. She recommended industry and consumers make more use of mesquite, brown flax, chickpea and pea flours, which are higher in fibre.

Donald Kasarda
Kasarda, author of the paper “Can an Increase in Celiac Disease Be Attributed to an Increase in the Gluten Content of Wheat as a Consequence of Wheat Breeding?”, discussed his findings, and revealed that while there is some evidence that wheat consumption increased in the second half of the 20th century, the content of proteins and gluten in wheat did not increase over the same period. Although we have been eating more wheat since 1950, we are eating far less than we did in 1900, when consumption was higher, and significantly so. An increase in obesity cannot be explained through wheat consumption, and it’s a myth that wheat breeding in the twentieth century has increased gluten content of our diets.

Dr John Zone, Dermatologist
Zone revealed that a gluten-free diet frequently improves dermatological conditions, such as psoriasis and eczema, in those with coeliac disease. CD can worsen underlying skin conditions, by increasing inflammation / white blood cells in the skin’s layers. Based on the anatomy of the skin, gliadin cannot be absorbed through hair follicles, and there is no evidence that gluten in shampoo can cause dermatitis herpetiformis or coeliac disease. Although gluten cannot be absorbed through the skin, it can be absorbed via your lipstick. (For more on gluten in skincare, check out our Skins Matter article here.)

Melinda Dennis, dietitian
Dennis is the nutrition co-ordinator of the Celiac Center at Beth Israel Deaconess Medical Center. She said the low FODMAPs diet may help with gluten sensitivity symptoms. To diagnose, she advocated using a hydrogen breath test, followed by referral to a dietitian, strict FODMAP restriction of up to eight weeks, followed by controlled reintroduction of FODMAP-containing foods (one ‘category’ of FODMAP foods, at a time – ie fructose, fructans, lactose, polyols etc.). Common food intolerances in those with gluten issues also include lactose intolerance and fructose malabsorption.

Other speaker points …

Felicia Billingslea of the FDA, speaking on the new gluten-free labelling rules, pointed out that only the terms ‘gluten free’, ‘no gluten’, ‘free of gluten’ and ‘without gluten’ could be used on foods (the UK / EU is stricter – only ‘gluten free’ is permitted).

Luisa Novellino of the Associazione Italiana Celiachia (Italian Coeliac Association) said that in Italy, CD is recognised as a social disease, meaning coeliacs have the ‘right’ to eat out. All caterers receive gluten-free training. The Italian Ministry of Health provides funds to guarantee GF meals in schools and hospitals.

Dr Benjamin Lebwhol made two interesting points: that a strict GF diet in CD does not necessarily decrease the risk of other autoimmune (AI) diseases (the data is conflicting), and that in coeliacs diagnosed without symptoms, the GF diet nevertheless has been found to improve gastrological function, and psychological well-being.

Fritz Konig of Leiden University Medical Centre warned about commercial enzymes for gluten: they leave toxic portions of gluten and are not effective.

Coeliac researcher Dr Elena Verdu pointed out that gluten is not the only possibly toxic component of wheat, and that FODMAPs and ATIs (amylase trypsin inhibitors) can also trigger symptoms, perhaps accounting for those with non-coeliac gluten sensivitity. Functional bowel disorders can be associated with gluten, dairy, caffeine, sulphites and other food components. Coeliac-like abnormalities can be seen in some IBS patients, and these can respond to a GF diet.

Poster Highlights ….

Some newly published or as yet unpublished research papers exhibited at the Symposium …

* researchers are looking at the role of the immune system, non-HLA genes, viruses, and the gut microbiome in the development of CD …

* reovirus may be implicated in some cases of CD …

* Could there be two types of CD (mirroring the situation with diabetes)? Preliminary data suggests type 2 seems to have a viral trigger …

* Canadian researchers are investigating whether the GF diet can improve blood sugar control in those with type 1 diabetes ...

* Almost a decade after a diagnosis of potential CD, 2/3rds of those who stayed on a gluten-containing diet, remained potential coeliacs only …

The hashtag for the Symposium was #icds2013. We’re happy to acknowledge with gratitude the tweets of many attendees in compiling this round-up, including @patientceliac, @advkitchen, @katescarlata_RD, @celiacbeast, @gfreelaura, @prettylilceliac, @Gfliving, @amyleger and many others …

The 2015 International Celiac Disease Symposium will take place in Prague, Czech Republic, 21st-25th June, 2015.


October 2013



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