I am thrilled to be able to attend the 16th International Coeliac Disease Symposium in Prague, Czech Republic and bring you all the latest news and research on coeliac disease and non-coeliac gluten sensitivity.
Here’s a brief wrap-up of what was covered during day one.
DAY ONE – PATIENT FORUM
The day commenced with a fascinating talk from Hertha Deutsch the President of the Austrian Coeliac Society and AOECS (Association of European Coeliac Societies) delegate on Codex.
Hertha commenced her talk with a brief history of gluten-free labeling in Europe. It quickly became apparent the significant role Hertha has played in ensuring the safety of people with coeliac disease around the world. “It is our human right to know the ingredients in our food,” Hertha told the conference.
The second speaker was Martin Kubik from the Czech Agriculture and Food Inspection Authority (CAFIA). Martin spoke about gluten-free food testing and levels of compliance.
The Czech Republic introduced their first gluten-free labelling legislation in 1997. This legislation has since been strengthened and in 2012 the laws were again amended, this time to comply with European Union regulations.
In 2014, the CAFIA tested 167 products labelled gluten-free. Only eight were found to be non-compliant. Martin gives four reasons for non-compliance in gluten-free food products:-
1. Poor manufacturing practice
2. No checks being performed on raw materials and final products
3. Checks performed have followed unsuitable testing methods
4. Adulteration of raw materials (ie. gluten-free ingredients mixed with cheaper ingredients).
The third speaker was Bianca Rootsaert, managing director of NCV (the Dutch Coeliac Organisation). Bianca spoke about the evolution of coeliac societies in the western world.
Coeliac disease is a little understood medical condition in the Netherlands. The society increased the number of proactive visits to GPs by running a controversial campaign asking “Could you have the most unknown disease in Holland?” Patient visits to GPs increased as a result of the campaign, with patients questioning doctors about coeliac disease.
The final speaker for the first session was Sarah Sleet, Chief Executive of Coeliac UK and Vice-Chair of the AOECS. Sarah focused on improving patient outcomes through ensuring the safety and adherence to a gluten-free diet.
Sarah identified four key issues when it comes to following a gluten-free diet:-
1. Availability of gluten-free foods
2. Cost of gluten-free foods
3. Nutritional quality of gluten-free foods when compared to gluten-containing foods
4. Identifying safe products
To assist with point one, Coeliac UK established the Gluten-Free Guarantee challenge for food retailers. This campaign encouraged every retailer to stock a core range of eight staple gluten-free products in all of their stores.
The eight staple products are:-
fresh white bread
fresh brown bread
National supermarket chain Asda have signed up to the campaign and other majors are making significant steps towards meeting the Gluten-Free Guarantee.
The second session opened with a fascinating talk on coeliac disease in adults by Dr Pavel Kahout, a gastroenterologist from the Czech Republic. While many people feel alone and isolated after a coeliac disease diagnosis, it was interesting to learn from Dr Kahout that descriptions of patients with coeliac disease date back as far as ancient Greece and Egypt.
Dr Kahout then proceeded to talk about symptomatology. In Europe, the average time between a patient showing the first symptoms of coeliac disease and reaching a definitive diagnosis is eight years in women and 12 years in men.
There is a group of coeliac disease patients who don’t display any physical symptoms. These people are said to have silent coeliac disease. Dr Kahout explained that it tends to occur in 10-15% of patients who have a first-degree relative with coeliac disease and in about 3% of second-degree relatives.
Dr Kahout was the first speaker of the day to touch on the link between genes and coeliac disease. He stated that 95-99% of patients have a genetic predisposition to coeliac disease.
Another of the hot topics from day one introduced by Dr Kahout was the subject of how much gluten (if any) is safe on a gluten-free diet. He cited a study that saw 49 patients with coeliac disease were given a capsule containing gluten each day for a period of 90 days The capsules contained either 10mg or 50mg of gluten. The researchers concluded that 10mg a day was safe as the participants had no mucosal changes after the 90 days.
To monitor the effectiveness of the gluten-free diet in patients, Dr Kahout recommends following serological markers. He suggests yearly testing of AGA and aTGA. He does this for his patients and many are surprised when the results come back high.
Another interesting point made by Dr Kahout was in regards to food allergy. He argued that food additives are not a major problem for people with coeliac disease.
The second speaker in the session was Dr Aina Popp a Paediatric Gastroenterologist from Romania. Dr Popp was speaking on coeliac disease in children.
Dr Popp has a positive attitude when it comes to diagnosing coeliac disease in her patients. “In coeliac disease we are lucky enough to know the trigger, so we know what is harmful. There is no other autoimmune disease where the trigger is well defined. Where we can prevent or repair the damage that has been done,” Dr Popp told the conference.
She warned that it could be difficult to know if a child has ingested gluten after following a gluten-free diet as symptoms may by different when gluten is reintroduced (accidentally or intentionally). Dr Popp did have a serious warning when it comes to following a gluten-free diet. “Gluten is the major player in this game and we cannot afford to play with it,” she said.
One of the hot topics during day one was that of oats and whether they are suitable for those on a gluten-free diet. Dr Popp said that in Romania oats are not suitable as it is not possible to source pure, uncontaminated oats. For those eating oats, she did explain that they have a lot of fibre and that gastrointestinal symptoms after consumption does not necessarily mean coeliac disease.
Dr Popp encourages parents not to jump to a coeliac disease diagnosis in children. Many of the symptoms attributed to coeliac disease overlap with other conditions, especially common food allergies.
In Romania, the average age of coeliac disease diagnosis in children is seven. Dr Popp says this was achieved by heavily educating health care providers.
Dr Popp then covered the risk groups for coeliac disease. She listed them as:-
Type 1 diabetes
Turner syndrome and Williams syndromes
A coeliac disease diagnosis can be concerning for parents, especially if their child suffers from sever gastrointestinal symptoms. Dr Popp assured delegates that there is no correlation between the level of symptoms and the amount of damage to the small intestine. However on the flip side, she warned that clinical remission is not simultaneous with histological improvement. “Your child may feel better but the gut may not have recovered,” she said.
In response to an audience question, Dr Popp reiterated that having a genetic risk for coeliac disease does not mean that your child will definitely develop the condition, even if they are high-risk. Do not put your child on a gluten-free diet as a preventative measure as there is every chance the child will not develop the condition. Instead ensure correct and regular monitoring in order to ensure a swift diagnosis if coeliac disease does develop.
The third speaker in the session was Dr Sibylle Koletzko from the University of Munich Medical Centre. Dr Koltzko discussed coeliac disease autoimmunity in relation to clinical symptoms.
The talk centered around studies designed to diagnose “at risk” children early. The results alerted researchers to the fact that up to 70% of children with coeliac disease do not display symptoms.
“Symptoms are not reliable to detect the majority of patients with coeliac disease,” Dr Koltzko told the conference. “You have to screen for a diagnosis.”
The final speaker in the second session was Dr Knut Lundin from the University of Oslo, speaking on the topic of non-coeliac gluten sensitivity.
He opened by telling the conference that in Oslo 5% of children are on a gluten-free diet, however very few of them have coeliac disease. The gluten-free diet is popular in Oslo but not because of coeliac disease.
Dr Lundin discussed the two opposing views in regards to non-coeliac gluten sensitivity. One side believes that it is caused by a specific reaction to gluten or “something else” in wheat, rye and barley. The opposing view is that non-coeliac gluten sensitivity is caused by a reaction to FODMAPs. Further studies are needed in this area.
For people already on a gluten-free diet requiring a biopsy for coeliac disease, Dr Lundin believes four weeks on a gluten-containing diet will be sufficient to obtain a correct result.
After the break was Dr Govind K Makharia from New Delhi spoke about diagnosing coeliac disease. It was interesting to learn that your likelihood of developing coeliac disease alters depending on where you were born. Likelihood ranges from 1 in 200 in some countries to 1 in 50 in others.
As previously discussed there is a significant link between your genes and risk of developing coeliac disease. The highest risk occurs between sisters and daughters. 1 in 6 from this group will develop coeliac disease.
Dr Steffan Husby then covered the specific aspects of coeliac disease in children. He opened by showing a slide illustrating all of the different organs coeliac disease can affect. He reminded the audience that coeliac disease is a multiorgan autoimmune disease.
For diagnosis, Dr Husby prefers biopsy to endoscopy. This is because villous atrophy is non-specific and can present in other conditions, so a definitive diagnosis via endoscopy is difficult.
The other conditions presenting with villous atrophy include:-
– cow milk or soy protein hypersensitivity
– intractable diarrhoea or infancy
– heavy infestation with Giardia Lamblia
– tropical sprue
– bacterial overgrowth
– Crohn’s disease (patchy)
– Autoimmune enteropathy
The next speaker was Dr Cisca Wijmenga from the University Medical Centre Groningen, Netherlands covering the role of genetics in a coeliac disease diagnosis. She opened by asking the conference how do we know the coeliac disease really has a genetic component?
In response, she cited a number of studies looking at the relationship in twins and families with coeliac disease. The studies concluded that if one identical twin develops coeliac disease the likelihood that the other twin will develop the condition is more than 80 percent. While the son or daughter of a coeliac parent is also more likely to develop coeliac disease (compared to a child of a healthy individual).
The gene HLA-DQ2 is the greatest risk for developing coeliac disease. If you don’t have a HLA gene you are considered low-risk, while if you have both you are considered high-risk of developing coeliac disease.
There are other factors on top of genes that contribute to the likelihood of a person developing coeliac disease. These include diet, sex and ethnicity.
Genetics is not enough to tell who will develop coeliac disease and who will not. The outcome can also be quite different. We don’t know why and other factors need to be investigated. One of the factors Dr Wijmenga touched upon was the role of bacteria in the gut and she believes that there will be a lot of research in this area in the future.
To date, genetics can be used to exclude coeliac disease in a patient, but it cannot be used to predict when or if the disease will develop or its progression. Finally, Dr Wijmenga reminded the conference that your DNA is not your destiny.