New scientific insights into coeliac disease

Thrusday, September 01, 2016
Author: Luisa Mearin is a paediatrician for gastrointestinal and hepatic diseases and a Univerity Professor at the University of Leiden, where she gained a doctorate in the field of coeliac disease. As head of Paediatric Gastrointestinal and Hepatic Diseases at the LUMC she has years of experience in the diagnosis and treatment and suport of children with coeliac disease and their families.

Parents are given strict advice from healthcare providers on the introduction of gluten into the diet of young children. This is questionable, as current advice is not supported by new scientific insights, says Luisa Mearin, Paediatric Gastroenterologist (Paediatric GE) in the Leiden University Medical Centre (LUMC).

‘It does not matter when you introduce gluten,’ says Dr. Luisa Mearin, Paediatric Gastroenterolo-gist in the LUMC, dropping a bombshell, because the principle in preventing coeliac disease was always that the introduction of small quantities of gluten in babies of 4-6 months old, preferably during the breastfeeding period, would reduce the risk of coeliac disease.

This was shown not to be true in the European Prevent-CD (Coeliac Disease) study, a prospective randomized study whose results were published at the end of 2014 in the prestigious New England Journal of Medicine (see also Mearin is the coordinator of this study into the prevention and risk factors of coeliac disease, a chronic disease caused by gluten in people with a genetic predisposition for this condition. Gluten is a protein particle contained in grains and grain products such as oats, wheat and barley. ‘Between 2007 and 2011 we included 944 babies from 7 European countries and Israel, in this cohort study shortly after their birth. All the babies have an increased risk of coeliac disease, because they have a first-degree family member (brother, sister, father or mother) with coeliac disease and one of the hereditary factors for this disease (HLA-DQ2 and/or DQ8). On average they therefore run a 10 times higher risk of developing coeliac disease (10 percent) than young children from the general population (1 percent).’


Some of the children from the study (the gluten group) were first given gluten when they were 16 weeks old, another group (the placebo group) were only given gluten when they were 24 weeks old. ‘When these children were 3 years old, the endpoint of the intervention study, it was found that for the prevalence of coeliac disease it makes no difference whether you introduce gluten at 4 or 6 months. The disease occurs just as often in both groups. Our findings correspond with those of another randomised study by an Italian research group. They introduced gluten to babies at 6 and

12 months respectively. This also makes no difference. The time when you introduce gluten therefore has no effect on preventing coeliac disease.’

This is not the only remarkable finding from the Prevent CD study. The researchers found that breastfeeding also has no effect on the development of coeliac disease. ‘It makes no difference whether you as a mother breastfeed or not, whether you fully or partly breastfeed, or whether you breastfeed for three months, six months or longer. This has no effect on preventing coeliac disease.’


These two studies caused a minor earthquake in insights on the introduction of gluten to reduce the risk of coeliac disease. In early 2016 they led to new advice on the introduction of gluten by the European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN), the European association of GHN paediatricians who prepare advice on diet for young children in Europe.

Mearin says, ‘One of the recommendations of ESPGHAN is that you can introduce gluten between four and twelve months. It seems logical not to give gluten earlier than four months, and to start with small quantities, but from four months you can introduce gluten when you want.’ This is an important message for parents, she explains. ‘It takes away a lot of their guilty feelings. I talk regularly to mothers, particularly from at risk families, who feel guilty because their child has developed coeliac disease and they could not breastfeed. These guilty feelings are not necessary. Of course you want to breastfeed your baby, but it does not help prevent coeliac disease. The strict advice that parents have always been given by healthcare providers up until now appears to be wrong. Parents can relax a bit more.’

Guidelines for gluten introduction

“Currently in Europe it is recommended introducing gluten between four and six months, preferably during the lactation period. These recommendations do not have enough scientific evidence. Therefore, I hope that paediatric health professionals are known adjusted accordingly”.

‘The prevent CD cohort has provided even more new insights,’ Mearin continues. ‘For example coeliac disease develops earlier than we thought. Five percent of the three year old children in the PreventCD study have coeliac disease. And three year old girls have twice as high a risk as boys.’

The new insights do not help in the primary prevention of coeliac disease, she acknowledges, but they do support the need for secondary prevention. ‘These insights help to identify children with coeliac disease as soon as possible.

This is especially important for young children with coeliac disease who may present with serious complications, such as retarded growth, diarrhoea and/or weight loss.’


Although the formal endpoint of the intervention study with gluten has been reached, the children in the prevent CD cohort are still being monitored. ‘Their average age is now 6.5 years and we are still learning from them. To continue with a follow-up study with them, we have set up a joint database and a biobank from the participating European study centres. In this biobank we collect body cells from these children. We can then use them to carry out research into the functioning of their immune system. These are important research questions, as we still do not know why some children get coeliac disease and other children don’t. And we would dearly like to know why.’