Oireachtas Joint and Select Committees
Thursday, 15 January 2015
Joint Oireachtas Committee on Health and Children
Developing a National Strategy for Coeliac Disease: Discussion
Apologies for the delay. We had some in-house business to conduct that always takes a little longer than envisaged. I remind Members and witnesses and those in the Visitors Gallery to ensure their mobile telephones are switched off for the duration of the meeting as they interfere with the broadcasting equipment even when on silent mode.
Before commencing I remind witnesses of the position of privilege. Witnesses are protected by absolute privilege in respect of their evidence to the committee. If witnesses are directed by the committee to cease giving evidence on a particular matter and they continue to do so, they are entitled thereafter only to a qualified privilege in respect of their evidence. Witnesses are directed that only evidence connected with the subject matter of these proceedings is to be given and they are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person or persons or entity by name or in such a way as to make him, her or it identifiable. Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against either a person outside the House or an official either by name or in such a way as to make him or her identifiable.
In the first session this morning we look at developing a national strategy for coeliac disease. On behalf of the committee I welcome, from the Coeliac Society of Ireland Professor Nicholas Kennedy, honorary president, and Ms Gráinne Denning, CEO; Dr. Patrick Doorley, former member of the strategy and programmes management team, HSE, and Ms Richelle Flanagan, dietitian and board member of the Irish Nutrition and Dietetic Institute.
To commence the meeting, I invite Professor Kennedy to make his opening statement.
Professor Nicholas Kennedy:
First, I thank the Vice Chairman and members of the joint committee for allowing us to speak to them today about our hope for the development of a national strategy for coeliac disease in Ireland. To inform members, they have some papers in front of them which I hope will be helpful to guide them through what I am saying. I will start by saying something about coeliac disease - in case members do not know what it is - and to let them know how people with coeliac disease are affected. I will also outline why it can be difficult to find that one has coeliac disease or for doctors to think of the possibility that one has coeliac disease and how it can be quite difficult for people to live with the dietary treatment, which is the mainstay of treatment. I will also give members some idea of what kinds of supports and services people with coeliac disease need to help them through this condition.
First, coeliac disease is an autoimmune condition and it leads to poor absorption in the gut for most people who develop it. In the past, coeliac disease was thought to be a childhood condition and it was thought that people grew out of this childhood condition. As this was believed as recently as the 1970s and 1980s, there still are people in practice in medicine who would have learned this in their medical student days. More recently, it has been recognised that coeliac disease is not something out of which one can grow and once it begins, it lasts for life. Unfortunately in some ways, the condition does not always present in the same way and has quite a lot of different manifestations. The classical presentation about which everybody learns in medical school is somebody who presents with weight loss and diarrhoea and this improves on a gluten-free diet within a few months. The condition initially was not very well understood and over the last 30 or 40 years, a lot of molecular detail now has become understood. This progression in immune research and in understanding the immune system has been very important in understanding diseases like coeliac disease that have an immunological basis. Unlike many of the autoimmune conditions, which include types of arthritis and systemic illnesses such as systemic lupus erythematosus, coeliac disease is distinct from those in that we know mainly what is the instigator. In this condition, the instigator is pieces of protein digested from a large protein present in grains, which roughly is called gluten. In fact, gluten is not a single protein but is a mixture of proteins whenever the flour in which the protein is found is hydrated. From the point of view of food, gluten is important in baked products made from wheat flour because its lends body to the dough and the bread and makes it better textured and more enjoyable to eat.
Unfortunately however, people with coeliac disease have a problem with the gluten present in those foods and it can lead to an autoimmune process that can damage both the lining of the gut and other tissues. More worryingly, it can damage tissues in other organs and this was not really understood 30 or 40 years ago. The severity of the autoimmune damage is quite variable between people and it can even vary throughout life in the individual concerned. It begins usually because somebody gets gastroenteritis and he or she has inherited the genetic possibility of developing autoimmunity. We now know there are more than 40 genes involved. It is not a single gene defect like Down's syndrome or Klinefelter's syndrome or anything like that. It is a quite complicated mixture of mechanisms but the real problem is the inability to switch off abnormal autoimmune sequences in the immune reaction to gluten. While there are lots of autoimmune targets, one that we use for diagnosis is an enzyme in the gut called tissue transglutaminase. As this enzyme also can be found in nerve tissue, in the skin and in various other places, the antibody reactions can occur in lots of different places in the body and not just in the gut.
I have listed some of the manifestations in the summary I have provided for members. They can see that in the gut, the coeliac disease we all recognise reasonably well can cause diverse manifestations, including recurrent mouth ulcers. Most people have digestive complaints that are relatively mild such as a bit of bloating or cramps in the stomach occasionally when they eat too much gluten. Sometimes there is nausea or diarrhoea but not everybody gets all of these and a smaller proportion can develop the skin manifestations, which include rashes and itching. Some people have itching only while others develop the full manifestation with a blistering rash, which is called dermatitis herpetiformis. Some people present to skin specialists and subsequently are found to have coeliac disease. This condition also responds well to a gluten-free diet and may not need any treatment other than a gluten-free diet. More recently again, it has been recognised that tissue transglutaminase 6 antibodies can occur in the brain and in the cerebellum and this can give rise to quite an unpleasant condition called gluten ataxia, in which people develop unsteadiness and a difficulty with balance and in co-ordination of movement. Once again, if this is detected early enough and the gluten is removed from the diet, this can improve after several years. Unfortunately, many people who have been diagnosed with this have been on gluten-containing diets for years and their condition is not reversible. Consequently, the ataxia is permanent although it could have been prevented.
As members can see from this summary, coeliac disease is not just a gut condition, which really is my main message. There also are people who develop poor fertility. Women who have difficulty conceiving, are subsequently found to have coeliac disease and are treated have a better chance of conceiving. Members can see there are nutritional complications because of bad absorption and one of the most common reasons for diagnosis is recurrent anaemia in women. This is often initially thought to be because of menstrual difficulties or poor diet but in fact is due to bad absorption. Osteoporosis is another very common complication, which can be due to poor calcium and vitamin D absorption and is much worse when gluten is in the diet.
Unfortunately, we do not know exactly how many people in Ireland have coeliac disease. If we assume the commonly-held view that 1% of populations in northern Europe have coeliac disease, we would expect approximately 43,000 to 45,000 individuals to have coeliac disease in the Republic of Ireland. However, nowhere near this number of people have been diagnosed and nowhere near this number have joined the Coeliac Society of Ireland as members. We do not have a coeliac disease register unfortunately, although in my clinic that I run in St James's Hospital with my gastroenterology colleagues, it is clear that the pattern is the same as in other places, where one has two to three women per man diagnosed. It also is clear that there is an increased risk in first blood relatives, in which between eight and ten times the normal rate would get coeliac disease. There are twin studies showing there is a high genetic potential. However, we think there are many other conditions associated with coeliac disease because of the genetic reasons and these include type 1 diabetes and Down's syndrome. Moreover, autoimmune thyroid disease is one of the more common associates of coeliac disease. Although these other conditions will not necessarily be improved by a gluten-free diet, it now is thought by immunologists that if people have coeliac disease first and go on treatment with a gluten-free diet, their chance of developing a second autoimmune condition is reduced.
One problem we have is we do not have an adequate diagnosis rate of coeliac disease here. There are many people in the population who have coeliac disease but do not know that and are not being treated and are likely to be suffering the complications if they are not found. I do not know whether any members present have family members or friends who have coeliac disease and I do not know how well they appreciate the life they lead on a gluten-free diet but people who are on a gluten-free diet face many challenges. First, when people are diagnosed it is not a terribly welcome diagnosis in some cases. In other cases, people are relieved that a cause for their long-standing symptoms at last has been found. Moreover, they know what to do about it and it is a relatively straightforward treatment involving diet and not many tablets or recurrent visits. However, it is not easy to remove gluten from one's diet, as it is contained in many staple foods. More worryingly in some ways, it is in many other foods as an additive or a contaminant and it can be very difficult to know which foods will be harmful in a situation.
What happens when people have been diagnosed?
First, they have to come to grips with having coeliac disease and, second, they have to come to grips with what a gluten-free diet entails. They then have to be successful in implementing that, which can take months or years. Some people never manage it.
I will return to the issue of diagnosis. People are often misdiagnosed prior to having their coeliac disease diagnosed. One of the most common misdiagnoses is irritable bowel syndrome. It has been found in some studies that up to 15% of individuals first diagnosed with irritable bowel syndrome, IBS, in fact had coeliac disease. Another confounding possibility is that someone has an allergy to wheat, which is IgE-mediated and not coeliac disease. This tends to occur in people who have other allergies such as asthma, hayfever, etc.. Some people with coeliac disease can also have allergies to grains but that is a different mechanism.
More recently gluten-free dieting has become a fad because it is perceived to be a healthier diet, for some reason. This fad has been driven by the media and celebrities who have turned to a gluten-free diet. Gluten-free foods are now being bought by many people who do not need a gluten-free diet for health reasons but are choosing it as a lifestyle. A study carried out in UCC suggests that for every one person who is buying a gluten-free food for their coeliac disease there are nine who are buying it for other reasons. This is resulting in a huge increase in the sale of gluten-free products and will, perhaps, make available a greater range of gluten-free products, which is to everybody's benefit but it also means that people who are serving gluten-free foods in restaurants and other food service areas are less convinced that people needing a gluten-free diet do so for health reasons rather than lifestyle choice.
Professor Nicholas Kennedy:
The gluten-free foods that I have spoken a little about are difficult to prepare in domestic kitchens because of contamination. They are also difficult for commercial kitchens to prepare. Recognising the ingredients requires careful examination of food labels, which are small and difficult to read and not everybody is well able to do that.
The Coeliac Society exists to help people who need a gluten-free diet. It has been on the scene in Ireland for some time. The number of people with coeliac disease is increasing and the number of people not diagnosed remains a significant problem. We need to focus on how this can be improved and how whatever services are available can be properly integrated to make the diet detection and ongoing care for people in Ireland with coeliac disease more efficient and effective.
Dr. Patrick Doorley:
I would like to speak briefly about some of the Coeliac Society's recommendations, which we will also take up with the HSE. These recommendations are aimed at ensuring services for people with coeliac disease are more equitable and at improving the outcomes for people with coeliac disease.
First, a coeliac disease register should be established. Such a register would continuously record and update data on individuals who have coeliac disease, including their age, gender, duration and nature of symptoms at the time of diagnosis, associated diseases such as diabetes type 1, thyroid disease, osteoporosis and others. Analysis of registry data would increase knowledge of the disease, help facilitate research and audit and improve outcomes for people with the condition. All data on the register would be anonymised, stripped of personal identifiers and access to the register and management of it would be in strict compliance with data protection regulations. The best example of a register which has helped to improve outcomes for people is the national cancer registry, although that is on a much greater scale than what we are seeking. We are also aware of the cystic fibrosis registry, which has also been very helpful. We are well aware that there is a great deal of work involved in establishing and maintaining a disease register.
Second, there is a need for a policy on targeted screening, which would be community and hospital-based, of people who are apparently well but have first degree relatives with the disease and of people with associated illnesses who would be at higher risk of having coeliac disease. In the first instance, a blood test would be carried out and then to confirm a diagnosis a biopsy would be undertaken. We recommend this because, as already stated, there are probably more people with coeliac disease who have not been diagnosed than there are people who have been diagnosed as having the disease.
Third, we recommend the introduction of practice guidelines and audit. Clinical guidelines are aimed at helping professionals to implement best practice and to make the best clinical decisions for their patients. They are based on evidence of what best practice is and do not remove the need for clinical judgments to be made. It is expected that clinicians, including doctors, nurses, dietitians and others, would operate broadly within those guidelines. The organisation of health care affects outcomes for patients. As such, this should also be the subject of guidelines. We recommend that a national guideline be adopted. However, there are a number of alternatives to this, including development of the guideline ab initio, which is a fairly painstaking task and takes about two years to do or a guideline could be taken from another jurisdiction and adapted for Ireland. We believe this would help in greatly standardising practice and would improve outcomes for patients with the condition.
We specifically recommend the establishment of a network of hospital-based coeliac clinics, which would be staffed by consultants, gastroenterologists with a special interest in coeliac disease, as well as dietitians and nurses with special training. Doctors would be encouraged to refer patients to these clinics, which would operate on the basis of best practice guidelines. I again make the analogy of the cancer programme under which cancer treatment has been centralised in eight centres, although I am not suggesting we need to establish eight clinics. That is a matter for further discussion. We believe the establishment of these clinics would ensure a higher quality service for people with coeliac disease. It is much easier to implement guidelines in two large centres where there would be a designated clinician who would lead audit of the practice therein.
Next is the issue of access to nutrition care through HSE dietetic services. Dietetic services in this country are generally seriously inadequate. Dietitians provide services for a range of categories of patients in hospitals and in the community, including, for example, people with cancer, heart disease, obesity, diabetes, malnutrition, particularly in older people, and people with coeliac disease. Diet is obviously a key issue in coeliac disease. All best practice guidelines recommend that people newly diagnosed with coeliac disease have a one-to-one consultation with a dietitian and at some intervals afterwards, especially if a question arises in regard to non-compliance, which might be inadvertent, with the diet. Unfortunately, one-third of our 380 primary care teams do not have access to a one-to-one dietetic service and approximately half of them have access to one for only a half day or one day a week. This is inadequate. The Coeliac Society recommends that recruitment of dietitians be given much greater priority in the health services. We know that this will not happen today or tomorrow and so recommend that in the mean time - we have raised this in discussions with the HSE - we explore how best the resources we have can be used to better effect. For example, group sessions could be established and dietitians could be required to train other health staff such as public health nurses in dietetics generally and, particularly, in regard to coeliac disease.
The next issue is policy on the availability of gluten-free food in health care institutions. Some of our members have told us that they have been served food in health care institutions that was obviously not gluten-free.
That is not acceptable. We recommend therefore that there should be training for all staff involved in the cooking, preparation and serving of food and that, furthermore, this training should be as a team because people have to work as a team to do that.
I will give the members some examples. Contamination can occur very easily in kitchens where ladles are used for non-gluten free sauces and so on. If gluten free bread is put into a toaster that is used for other bread that can be contaminated. Also, the meal could be served to the wrong patient. Some people know their disease very well and they will say that to staff but others might not. There are people in the health institutions who are not able to speak up for themselves.
This is a big issue and we believe there should be written protocols, which would be stronger than guidelines, because there are certain things we simply must do with regard to serving gluten free food in every institution, and the training should be mandatory.
On the funding for the community outreach programme, the society has already applied for a full-time person to run a community programme. The society has a very small number of staff in Carmichael House. We want a community worker or somebody with that kind of training to head up a community programme educating people with coeliac disease, perhaps in group sessions but also linking in with the dietetic services. We would like to take on one full-time person.
In terms of our overall approach, the members are probably aware of the Healthy Ireland strategy. Our approach is to improve the level of health and well-being at all stages of life; to improve early detection of coeliac disease; to allow for successful intervention through community-based services; and to increase the degree to which associated diseases with coeliac disease such as those we mentioned already can be prevented.
Some of these actions we are recommending are highly cost-effective. Dietetic services, for example, are low tech and low cost compared to many other interventions in the health services and the outcomes are extremely beneficial, including the prevention of osteoporosis and other illnesses I have mentioned already. We hope to have a meeting with the Health Service Executive soon where we will raise all of these issues.
I welcome the witnesses. Everybody knows somebody who is a coeliac or is aware of somebody who is a coeliac and we are probably all conscious of the broader issues around the disease itself but when we outline the impact it can have on individuals, the difficulties with lifestyle in terms of requiring a gluten-free diet, and the lack of resources and supports for sufferers of coeliac disease, it is clear it is an issue that has to be addressed in the context of resourcing.
The witness said that approximately 1% of the western European population is diagnosed with coeliac disease. We do not have that rate in Ireland so either we are not diagnosing or are hereditarily different from the rest of western Europe, which is unlikely. Why is that the case in view of the fact that we know a good deal about the disease, that we have a poor detection rate and a poor diagnosis rate? What are the reasons for that?
A seriological blood test can be done to diagnose coeliac disease, and duodenum biopsies can be performed also. Are people presenting with the symptoms and not being followed up in terms of the diagnosis? Are general practitioners mistaking irritable bowel syndrome for coeliac disease? All of those issues have to come into play. We all talk about primary care settings as the front line in terms of the provision of health care but if we are not diagnosing at the rate that should be anticipated in a normal population it is clear there are problems at the coalface in terms of detection and diagnosis. What can be done in those particular areas to address that?
In terms of the health implications of non-diagnosis, the witness referenced vitamin absorption. That is a critically important area in women of child-bearing age whereby mineral deficiencies can cause problems initially in getting pregnant and also during pregnancy. Should we have a greater awareness programme among our health professionals and equally among the broader population?
On the issue of the dietetic services, coeliacs are not alone in having poor dietetic services. We have poor dietetic services in general, which are under-resourced. We have not taken that issue seriously, not only in terms of coeliac disease but in obesity and many other areas.
There is also an obligation on the owners of food outlets. When the witness mentioned institutions I presume he was referring to hospitals, large institutions and, equally, the small restaurant on the side of the street. Should there be some form of inspection process through the Food Safety Authority, for example, whereby when it is inspecting other areas there are clear protocols for ensuring there is non-contamination and that the staff are informed of their obligations to ensure they have gluten-free diets available but, more importantly, if they are providing those diets that they are done in a way that there is no potential for contamination? I am merely posing the question. In terms of food safety in general, is this not something that should be examined to ensure we protect those who have been diagnosed with this disease?
The witness said that nine out of ten people who are using gluten free products do not have coeliac disease but if someone is using gluten free products it is difficult to detect whether they have coeliac disease because they are not showing with the symptoms. People who have irritable bowel syndrome might hear from another person that if they follow a gluten free diet they will get better. They may never have been diagnosed with coeliac disease but they had the symptoms and dealt with them themselves and if the witnesses' organisation does the test, obviously it will not diagnose as many people.
I welcome the panel here this morning. If the figure is as high as nine out of ten, they would be as well advised that the reasons for opting for gluten free products are not diet related. There are a number of people taking gluten free products who are not coeliacs, and for the wrong reasons. They might be surprised to know that it may not contribute in the way they expect.
I am the father of four children who are coeliac. I have one who is not; I do not know how she escaped. We are very familiar with the condition and dealing with it. It is important to say at the outset that big advances have been made. There have been major developments and improvements in increased awareness, increased choice of foodstuffs and the quality of foodstuffs. I remember the quality of some of the foodstuffs in the early stages of my children's diagnosis was very unattractive but that has changed dramatically. It is important to put out the positive story because huge strides have been made, and the Coeliac Society has contributed enormously to that advance. More restaurant menus are offering clear coeliac choices and the allergen highlights on food products, which is not just about coeliac disease, about the presence of wheat, rye, oats or barley covers a whole spectrum from nuts, dairy product and eggs, depending on the issue the individual may have.
Promotion of awareness is hugely important and I very much welcome the fact that the witnesses are here before the health committee today. I hope that in itself will be a contribution, not only in terms of our being re-briefed but also in terms of public awareness arising out of this engagement. I would like to ask if Ms Denning would mind circulating the members with a copy of the gluten-free booklet, the product listing, after the meeting. She may not have one for everyone in the audience with her but if she does that is even better. It would be helpful because many of the members would not have had sight of the different publications and information the Coeliac Society continues to furnish to those who are registered.
As regards coeliac clinics at hospital sites, Professor Kennedy mentioned the current position in his presentation. What is the current position across hospital sites? My own experience would suggest Crumlin hospital is where the great bulk of final diagnoses - in terms of the biopsy - are made. Professor Billy Bourke and the team there are excellent and I pay tribute to them. Is that the only location at this time? Can Professor Kennedy give us an outline of the network, if one exists, and what he thinks should be the optimum arrangement to work and lobby towards?
It is very important for this committee to be able to reflect patient needs in hospitals, certainly to the HSE. Concerning food provision and preparation, it is very important to highlight preparation as much as the actual food provision itself. That is something the committee can certainly do.
The screening programme mentioned in the presentation is very understandable. Dr. Doorley talked about this as well. It is understandable to target siblings and immediate family, but we all accept that the extent of coeliac disease is much greater than the confirmed statistics suggest. Its presence is much wider than that. How could initial screening programmes be rolled out beyond just that target base? I am firmly of the view that the earliest diagnosis possible is in the interest of the young person and the individual's life path, but it is also cost effective because we are saving people from having to look for other interventions later in life as a result of neglecting the condition.
I noted the list of associated conditions and would like to ask either Professor Kennedy or Dr. Doorley to elaborate a little on EE. We were wrestling earlier with the name of the EU Commissioner for Health and Food Safety and here I go again, I am going to wrestle with this but I will do my best. Eosinophilic oesophagitis, EE, is the effect on the lining of the oesophagus. I have picked up recently that EE is showing itself more and more as an associated condition in those diagnosed with coeliac disease. Can the witnesses comment any further on that?
I thank the witnesses for their presentation and note their recommendations. I do not want to go through each of the points but there are three specific areas I would like to raise. My understanding of coeliac condition would be mainly from my involvement as a volunteer with the Girl Guides in organising events. Dietary requirements come up and we have many discussions on the issue. The majority of leaders would say it is difficult when we have events, mainly in hotels or other types of facilities, and the issue was touched on by Professor Kennedy. There is a lifestyle change whereby some people are opting for a gluten-free diet, which leads some establishments to believe a little bit will not do any harm. The people running the hotels think they are looking to change their lifestyle and that gluten will not really affect them. I have seen the direct effects it has on individuals.
For many restaurants, if they changed their stocks and sauces, the menu would open up. That shows the lack of awareness about coeliac disease. It is not just a fad, and maybe that is an awareness we could get across. Some hotels are excellent but some may indicate that a little gluten will do no harm. There is an issue there. When I heard about an increase in gluten-free diets as a lifestyle choice, the optimist in me was saying that is great, it means there will be a wider selection of products and prices will hopefully come down. The witnesses have explained the downside of it to me.
On the screening process, what age of detection is more usual? Most people I know were diagnosed in young adulthood rather than as children. The screening process and early detection have been mentioned but unless there is a direct family member it does not seem to come up as a possibility. I noted from the presentation that previously it was thought children would grow out of it. I hear parents being told by dieticians that their daughter or son will grow out of it if the parents introduce little bits of gluten to them. That attitude may still be prevailing. I see heads shaking but this is not only me thinking this, it still prevails today.
I was surprised to hear about the cross-contamination issue in the health care institutions. They are not being mindful of the dietary needs of the individual residents and patients. I know food in our health care institutions is an issue our Chairman, Deputy Conway has raised on several occasions, but perhaps this committee could look more widely at the dietary needs of individuals in different recovery stages or life stages. I have direct experience of the quality of the diet as my father is in a nursing home and, for example, the cross-contamination issue of the toaster seems obvious although it is not. I would have thought those working in health care institutions would be trained and retrained on a regular basis and that the issue would be stressed. Perhaps the committee could consider those wider issues also.
I thank the witnesses for their detailed presentation and the documentation we have received. As regards the area of specialisation, how many specialists are working in this area and how are we doing in terms of the ratio of specialists to population? Is there a need for a lot more people in this area?
The first point of contact people have is with their GP and a lot of GPs are working together as groups now rather than on an individual basis. Is there a need to encourage sub-specialisation by GPs in each region so that people can have access to a quality service?
I note from Ms Denning's presentation that support services available from health professionals for the management of the disease were rated as poor by 46.5%. What needs to be done within the medical profession to improve that rating? A figure of 46.5% is a very high proportion of people to consider the level of health care they received to be poor.
The second issue follows from Senator van Turnhout's point about dieticians. I know of one case, for instance, where dieticians in hospitals will not see people who are pregnant unless they have been diagnosed with diabetes, which I find astonishing. It would be far more beneficial also if dieticians based in hospitals could visit or if there were some scheme in place for them to visit nursing homes, because the current procedure is that a patient who wants to get support from a dietician in a hospital must be transported from the nursing home to the hospital and back, at huge cost. An issue is arising in nursing homes where there are dieticians - and this is not a criticism of these dieticians - who are employed by pharmaceutical companies, who are visiting nursing homes and giving favourable-----
It relates to the use of dieticians and how we are not using them to the best effect in helping people. This goes back to the issue where 46.5% regarded their treatment as poor. How can we do a little more in relation to better co-ordination of services? What is the witnesses' recommendation in that area?
I thank the witnesses for their presentations. They have been very comprehensive. They have outlined all the issues and have made a series of recommendations. Their presentation is stating the obvious about what we need to do. With regard to people going undetected, a friend of mine found out only last year that she was a coeliac, having lived her life to date without knowing. The witnesses made recommendations with regard to databases as well and I can see that if one does not have a database, it is difficult to know how to improve services.
What strikes me, aside from points others have made is that people can be in hospital or care home situations and not even be provided with the correct food. That is a serious concern because one is supposed to be caring for someone who is sick and it is actually making them sicker if one is not giving them what they need. I would never have thought about how easy cross-contamination is, as was highlighted, and that it may happen simply by putting something into a toaster or through food processing or cross-contamination in kitchens, perhaps because people have not been trained. This is also a huge concern.
I picked up on another issue about the Coeliac Society and the key role it plays in helping people. The witnesses mentioned food safety, the random checks of foods and meals sold as gluten-free, and inspections triggered by consumer complaints and confusing labelling due to legislation. Who carries out these inspections? What is the follow-up to them? What happens when these things are detected?
I thank everybody for their presentation. On cross-contamination in hospitals and so on, particularly around a toaster, a friend of mine was in my local hospital last week for an operation and when she asked for a slice of toast a few hours later, she was told that they do not make toast anymore because of health and safety. I do not think it was anything to do with being coeliac, but that is what she was told.
A few things popped off the page, so to speak. I have a family member who has very severe coeliac disease. It was discovered about ten years ago when he was in his 30s. He has a young family and it is difficult at times for his wife to cater for his needs as well as those of his children because of everything that goes on in a family home with young children. As he was diagnosed with it quite late, it is quite severe. I do not understand the level it can go to, but I believe it is very serious. One of the things he constantly reminds me of is the cost of gluten-free products in the supermarket. Professor Kennedy was saying that people are now buying it for a lifestyle. It is nothing to do with lifestyle for him. It is to do with necessity more than anything else. I have seen some of the products and I have tasted some of them. They are not very pleasant, but they are very costly. Particularly for that family member, it has been a very difficult, life-changing experience, not only for him but also for his wife and children. It has made life quite difficult for them, even though they try their best.
Does it affect young children and how is it diagnosed in young children? Is it tested from birth? I will say in a moment why I am asking that.
Why, according to the Coeliac Society membership database, have 76% of those who have contacted the society been female, compared with 24% who were male? Is that because men generally do not look after themselves or bother about their health? Regarding the cost and if there is a bigger market for it, is it to do with the fact that it is difficult to produce these food products because of contamination and so on?
The reason I asked about young children was that I recently had a new granddaughter. She is four months old and the hospital has spent the past couple of months trying to diagnose what is wrong with her, because she has been put on a food called nutramigen. I am asking that because when one is a young mother and has a young child, one is conscious of the fact that if something goes wrong, one is trying to find out as much as possible. My daughter has searched the Internet and done everything. That is the reason I asked. It is ongoing. They are treating her with this food or milk product, but at €18 a tin, the cost is huge. I was shocked last week when she told me - it is probably nothing to do with coeliac disease, but I am just referring to the cost issue - that she pays her €144 drugs payment and then she was called back to the pharmacy to say that she could only have ten tins of this food on this €144 and everything else after the €144 she had to pay for herself. On average the baby is using a tin every three days now. At the end of the month it will cost them €300 to feed a four month old child. That is astronomical. It just does not make sense. I know I am straying from what the witnesses said, but it relates to the cost factor. Can it be diagnosed in young children and how is it diagnosed?
Professor Nicholas Kennedy:
That could take a while, but I will try to address a number of them. Deputy Kelleher's comments were first. He asked why we did not have 1% of people diagnosed in Ireland.
The 1% I referred to are people who are likely to have coeliac disease. I do not think there are very many countries in which they are all diagnosed. In Europe, probably the country with the highest rate of diagnosis is Finland. I accept that we have a poor diagnosis rate here. The most important reason for this is probably low awareness of the variety of symptoms and signs that can be manifested by coeliac disease. This applies to the general population not being very aware, to GPs perhaps not being aware enough and to specialists who may not be aware enough, in some cases, to screen for coeliac disease, for instance, in all cases suggesting the possibility through IBS. This is one of the biggest categories of patient attending gastroenterology outpatient clinics. I agree that training is needed for quite a few categories of health care staff. There should also be an improvement with a greater public awareness campaign. The Coeliac Society of Ireland gets involved in a coeliac awareness day every year. It is very difficult to reach everyone without spending a lot of money on expensive media campaigns. However, that could be a way of improving awareness.
Deputy Kelleher also asked about vitamin absorption in women of child-bearing age. This probably goes back to the same point on awareness. Improved awareness is a key issue. Everyone here is probably aware of the recommended need to take folic acid supplements when considering pregnancy to reduce the risk of neuro-tube defects. If a person has active coeliac disease, the absorption rate of these folic acid supplements will be lower. That is something else people need to know. People with undiagnosed coeliac disease think they are doing their best by taking 400 mg folic acid a day, but it is not going to be absorbed properly and it is not going to have the desired effect. In undiagnosed coeliac disease, there has been research in a number of countries showing an increased rate of neuro-tube defects occurring in people with undiagnosed coeliac disease who do become pregnant.
Deputy Kelleher asked about the need for inspection and whether training was needed for people working in restaurants. Training is required. The Food Safety Authority of Ireland does offer training for HACCP and it includes a certain amount in that training about gluten. However, it is not a specific training programme about gluten and its importance to people on a gluten-free diet. The focus of such training programmes on coeliac disease could be improved. The Coeliac Society of Ireland met the Food Safety Authority of Ireland with that hope in mind two years ago but has not made much progress in getting a better training programme designed. In the UK, the coeliac society has developed a training programme for caterers and those involved in food service. It is possible to take this online. It issues a certificate of completion for online completion. There are other models that could be used in Ireland. The UK coeliac training programme is not entirely suitable for Ireland because of some of the different ways of doing things here but it could be adapted.
I am not sure if there were any other issues which Deputy Kelleher raised which I could answer.
Ms Richelle Flanagan:
Following up on the pregnancy issue, a paper was published in 2014 that showed in 1,000 women a significant increase in the risk of spontaneous abortion and premature delivery and a later age of menarche associated with coeliac disease. There is quite a significant impact in terms of fertility and pregnancy. There are probably many women who could be saved going through the fertility process if a GP did a simple blood test in terms of an early screening process. There are definitely savings to be made in terms of IVF, both for people who have to do it privately or via the public sector.
I am a dietician and previous president of the Irish Nutrition & Dietetic Institute, INDI. To put dietetic services into context, the average ratio is one dietician to 54,000 people. In terms of the Tallaght region, which is probably one of our most underprivileged areas, with a population of 674,000 people, there is only one dietician to 140,000 people. When one thinks of the prevalence of coeliac disease as a percentage, there is no way that these people are being seen. It is a real issue. In the north-east areas, it is 1:54,000; in the north city, it is 1:76,000; in the HSE North, it is 1:78,000; and in the mid-west, it is 1:74,000.
Following on from Dr. Doorley's point, and some of the points that have been raised around access to nutrition related services, there is an issue. When it comes to coeliac disease, people are just not being seen.
Professor Nicholas Kennedy:
There are a number of things. However, eosinophilic esophagitis is more related to allergy than to auto-immunity. It is a rare thing, but it does happen with increased frequency in coeliacs. It also happens without coeliac disease more often than it happens with coeliac disease. Therefore, I do not see it as being a specific complication of coeliac disease. I am not sure if that answers what the Deputy hoped to get. May I address another question?
Professor Nicholas Kennedy:
There were various questions about screening. Screening is not going to pick up coeliac disease for an individual until he or she develops it. Even though a person may be born with the genetic potential of coeliac disease, he or she may never develop it. Therefore, screening on a regular basis is not necessary. Population screening has not proven a realistic prospect in any country because of the relatively low pick-up rate. However, specific groups should be screened. That is in recommendations that have been published over many years and it is not being carried out properly in this country. There are recommendations about screening that are scientifically based and they would be better used rather than not.
Senator Burke asked about specialists. Most gastroenterologists are quite capable of diagnosing coeliac disease. I cannot give a figure for the number of gastroenterologists in practice, or the deficit, but I know that the endoscopy services are saturated. If GPs think of coeliac disease and they need an endoscopy to prove it, there is going to be a wait. There are different waiting times in different parts of the country. Paediatric gastroenterology is a particularly difficult area. There are particular areas in the country where the waiting times for adult gastroenterology are longer. A person does not need to be sub-specialised in coeliac disease, but it is true that all gastroenterologists are not equally interested in coeliac disease or equally aware of the large variety of presentations of coeliac disease. It would be better if there was recurrent training for people with gastroenterology practices. This is something that could be addressed through the Royal College of Physicians for continuing professional development design.
The dieticians, equally, need to be trained. Not all dieticians are aware of or efficient in dealing with coeliacs. There is a lot of opportunity, or need, for training in many different areas.
Professor Nicholas Kennedy:
Currently, to my knowledge, there are three hospital-based coeliac clinics in adult provision in the Republic of Ireland. In paediatric provision, there is one in Crumlin. I help with the coeliac clinic in St. James's Hospital. It is a fortnightly clinic with a small quota. The current waiting period for a new appointment is until July. In Cork, there is a coeliac clinic. It has stumbled over recent years because of the withdrawal of dietetic services from that clinic, but these have now been restored.
In Galway, there was a period of several years where the specialist had retired and the coeliac clinic did not operate. Now it is operating but like the other coeliac clinics it is not fully serviced and I understand there is no full-time dietician associated with it, so the existing three coeliac clinics are not adequately provided for in the hospital service plan. The density of population needs to dictate where the coeliac clinics should be properly located. So far as I am aware there is not one in Limerick. A scoping exercise is needed to give a proper answer to how many coeliac clinics are needed and how frequently they need to be offered. I cannot easily give that information off the top of my head.
I thank Professor Kennedy. I am sorry for cutting the meeting short. I thank Professor Nicholas Kennedy, Ms Gráinne Denning, Dr. Patrick Doorley and Ms Richelle Flanagan for attending the meeting and for the information provided. I look forward to receiving the booklet from Ms Gráinne Denning. We will take it upon ourselves to make that information available to people in our constituency offices and to highlight today's meeting via our Facebook and Twitter pages to draw attention to the organisation. I thank the witnesses for their time and their work. We wish Dr. Patrick Doorley well in his meeting with the HSE and all the representatives with their plans for an outreach worker. Given the issues raised it appears such a person is needed and would benefit all of those who live daily with coeliac disease and, perhaps, for the promotion and knowledge around the issue. The meeting will be suspended to enable the witnesses for the next session to take their seats.