“I love my job!” proclaims Nick Trott and truly, there cannot be a nicer thing to hear when interviewing someone about their profession than that. Nick currently works at the Royal Hallamshire hospital in Sheffield specialising in the department of gastroenterology.
“For me I’ve always been interested in gastroenterology since qualifying as a dietician. I love working with people, with individuals and I suppose for me, I love helping motivate people to enhance their health!”
Of course it is clear talking to Nick that it is not only the people themselves but the pure science behind the human body that fascinates him, getting very excited when discussing ‘tissue transglutaminase’ and other sci-fi sounding biological terms.
“Maybe I’m a bit too enthusiastic about it”, he laughs but I don’t think enthusiasm is anything to apologise for, especially when you can make something as irritating as Coeliac Disease just a little bit easier to manage.
Recent studies have been published by researchers at the Sheffield Teaching Hospitals Gastroenterology Unit investigating problems with gluten that are not related to Coeliac Disease, i.e. Non Coeliac Gluten Sensitivity. But if the problem is with gluten, what’s the difference between Coeliac Disease and Non-Coeliac Gluten Sensitivity?
With Coeliac Disease, which is an autoimmune condition, the body thinks gluten is attacking it so it releases antibodies to the gluten. The body’s response to gluten is as though you’ve got a virus or a bacterial infection and the immune system will send out antibodies to neutralize or kill off that bacteria or virus. This is what we call an inappropriate response in the body to the presence of gluten and as part of that process your gut can get damaged.
Because the gut gets damaged, you can develop something called Villous Atrophy which is essentially a flattening of microstructures, these finger like projections, called Villi. Now that’s classical Coeliac Disease which for many people can cause gut symptoms like bloating, stomach pain and diarrhoea, but can also be associated with more long term health problems like vitamin deficiencies, thinning of the bones and an increased risk of developing other autoimmune diseases.
With Non Coeliac Gluten Sensitivity you don’t have the changes to the gut but you may have a lot of symptoms that can be associated with Coeliac Disease: distention, diarrhoea, alternating constipation, fatigue and it can be very socially debilitating for a lot of people.
So if we can treat that then we’d like to.
We’re hoping the current research will give us a better idea if a gluten free diet can help in Non Coeliac Gluten Sensitivity in the same way it does in classical Coeliac disease.
If it’s symptoms that are the key link between the two problems, How do you convince someone who is Coeliac and asymptomatic that it’s damaging them on the inside and that a gluten free diet would be infinitely better for them?
It’s a big behavioural change following a gluten free diet, so, like anything like that; it’s about what your motivation is. In clinic we’re not there to berate or cajole people, we’re there to support people making an informed choice and work with individuals to make the transition to a gluten free as simple as possible.
Can’t you just give them a push or something?
Well it’s about it’s, seeing where they’re at and what barriers they’ve got to adopting a gluten free diet. Many people will have number of factors that maybe they’re finding particularly difficult and that’s why we’re there to support them.
Sometimes people who aren’t particularly symptomatic they can come into clinic and they’re like, ‘how have I got this condition? I don’t feel unwell’. But then, with anyone, we go through giving them the information because then they can make that informed choice.
Whether you have symptoms the long term treatment of a gluten free diet is to minimise the risk of a long term complications: thyroid problems, type one diabetes, liver complications.
So we hopefully give an understanding of why we’re treating Coelaic disease, but also the bit that I really enjoy is saying, “I can make this easier for you by giving you information and supporting you.” So yes it is about understanding the condition but also giving the individual the support that they need to make the diet easier.
Staying 100% gluten free at all time is almost impossible, is there anything you can do if you accidentally get “glutened”?
In a utopian world you’d be 100% gluten free at all times if you have a diagnosis of Coeliac Disease. We don’t live in a perfect world and occasionally may go out to a restaurant and get exposed to gluten but a lot of people say, since the new Allergen Labelling Legislation laws have come in, that it’s got a lot better.
So if you do get exposed and you are very symptomatic I would say, depending on the symptoms you’ve got, it’s very important you stay hydrated. Sometimes people feel that maybe over the counter medicines like anti-diarrhoea medicines or anti-constipation medicines can help but it’s important to discuss that with a medical professional like your GP if you’re going to use those regularly.
If you’re staying symptomatic for more than a couple of days, it is imperative to go and see your GP because if you’re losing loads of fluids and it has been over a couple of days it may have not been a gluten response.
The most important message is: Get yourself back on the gluten free diet because that’s the underlying issue and that will mean that you’re not exposing yourself to the thing that’s causing the symptoms.
Yeah it is unfortunate when you experience symptoms after making such an effort to cut out gluten! Gluten free food can often be rather expensive, what advice would you give to people eating a gluten free diet on a budget?
Anyone following a gluten free diet will know the products can be up to three or four times more expensive! Hopefully, over time, that will change with the increased diagnosis of the condition and with it being more recognised.
But for now, in terms of the budget question, it is important to recognise that there are three categories of foods to think about when following a gluten free diet:
- Foods that are naturally gluten free
- Foods that have got obvious sources of gluten
- Foods we call no gluten containing ingredients (NGCI)
The third category is foods that have not been tested, but companies or manufacturers have never used wheat, barley, oats or rye in the manufacture process. They are also very careful with their cross contamination controls.
So that’s things like soups, ready meals, sauces, meats, things like that are a normal price and are going to be absolutely fine for people with Coeliac Disease. The labelling laws are now much more transparent which does make things a lot easier.
Also if you’re a member of Coeliac UK they issue a Food and Drink Directory which can be really useful to identify what you can and can’t eat. You can even get a Coeliac UK App for your smartphone these days which can be quite useful.
The other thing to say is if you can get hold of a prepaid prescription, then it does make it a lot cheaper than if you’re paying for prescriptions. It takes it down from £1,444 [based on each item costing £8.60 per prescription in the UK] per year to £120.40 a year so it is worth considering.
I think it’s understanding what foods are available and bearing in mind that yes you do have to be strictly gluten free but it’s making sure that you understand what foods you are able to have. Naturally gluten free foods should of course be in the diet, and then you should have some foods that are what we call no gluten containing ingredients, at a normal price. Hopefully you will be getting food on prescription and then the food from the ‘free-from’ aisle should just be luxury items like gluten free chocolate biscuits and those sorts of things just to make the diet a bit more interesting.
Hopefully if you’re doing that it shouldn’t be too expensive.
Speaking of the Coeliac UK directory, they list products that contain barley malt extract. Let’s say you eat something with barley malt extract for breakfast, lunch and dinner wouldn’t it all add up to more than a recommended amount?
Barley malt extract is made from barley and barley contains a gluten called hordein. Barley malt extract because it’s processed it has slightly less gluten in it but still has enough to cause problems if it’s used in a standard amount.
However, if you see it in a supermarket own brand rice or corn based cereal then generally they have less than 20 parts per million and are OK. I would recommend that people really check in the Coeliac UK Food and Drink Directory first. Eating any amount of those foods is very unlikely to push you above the amount where you would have enough gluten in your diet to stimulate the autoimmune response. In the same way most people with Coeliac disease can tolerate Barley Malt Vinegar.
There is a subset of people with Coeliac Disease who are super sensitive and for those people they need to stay away from any form of barley malt extract. That’s why it’s important to stay engaged with services. Anyone with Coeliac Disease should have an annual review with a dietician to monitor their bloods and give them any new information about the condition and inform them of any research.
We have briefly mentioned the new labelling laws, how do you think the new labelling laws will change things for people with Coeliac Disease?
Since December 2014, there have been some new labelling regulations that have come in across the whole of Europe. By 2016 these new rules have to be fully adopted so you may still see packets that have got the old type of labelling on them at the moment. What I mean by that is you may still see labels that have allergy advice boxes.
With packaged foods, if you pick up say, a ready meal or soups or sauces and you look at the ingredients list, what you will see now is 14 common allergens can be highlighted – that includes gluten containing grains: wheat, rye, barley and normal oats.
Now if a product deliberately uses wheat, barley rye or normal oats, they have to declare it on the label and it has to be in bold. The allergy advice box is been phased out, instead there will be statement stating ‘refer to ingredients list in bold’. This is a big step forward because previously you may have just had an allergy advice box which could be inconsistent because the allergy advice didn’t have proper legislation behind it.
The other thing to say is, if a product says may contain wheat, barley, oats or rye that’s now more legislation behind it as food companies given advice on these statements by the Food Standards Agency. For an example, if you’ve got a crisp product and it just has potatoes, oil and salt in it, then that’s fine because they’ve not used wheat, barley, oats or rye. But if it says may contain wheat, barley, oats or rye, or made in a factory handling wheat, barley, oats or rye, there is a significant risk that it has been cross contaminated and you need to avoid it.
In terms of the catering side of it, they need to communicate to you either in writing or verbally, what menu items contain those common allergens in terms of wheat, barley, oats or rye.
The legislation is very comprehensive as it covers: restaurants, cafes, burger vans, ice cream vans and I think what I really want to see in the next few years is for places to make it very visual and clear about what people with Coeliac Disease can have.
It’s going to make eating out a lot easier and what you will find is that some restaurants even have a separate gluten free menus now.
That must make foreign travel a bit easier now, at least in Europe! Are there any countries you’d recommend as being easier to visit on a strict gluten free diet?
Obviously places like mainland Europe can be easier because of the European wide legislation on labelling and things like that. Having said that, just like in the UK, you may have a different experience depending on where you’re going but there are things that can make it easier.
The first thing I think if you’re going for a short trip, one thing you can do is take some gluten free items with you. I’d recommend anyone travelling should have some gluten free standbys in their luggage, snacks like: gluten free cereal bars or naturally gluten free foods like dried fruits and nuts, particularly if you’re out on trips.
What we can do is provide a letter to all the people who see us in clinic to say that you have Coeliac Disease and that they [the airline] should offer you a bigger baggage allowance. Depending on the airline, you can carry around 5 and even up to 20 kilos extra and that makes it easier because you can take some things with you.
The other thing to bear in mind on mainland Europe, the labelling laws are slightly different, so foods labelled ‘Gluten Free’ in the UK are less than 20 parts per million, in mainland Europe it’s between 20 and 100 parts per million. But in the short term that should be fine for most people with Coeliac Disease.
The other thing that can be helpful is Coeliac UK offers some resources for travelling. One of the things they offer is a selection of travel guides that are free on their website – if you’re a member. These are an A4 sheet that explains about whether or not there’s a Coeliac Association in that country and it gives you details about that, it also gives you details about the gluten free products you might find in that country. Most importantly, it also translates for you, so you can print off a sheet, or a couple of sheets, and take it out to restaurants with you and it will just say: I have Coeliac Disease and I need to avoid the grains wheat, barley, oats and rye, explains about cross contamination in that language, so I think that can be really useful.
If you’re going further afield and maybe for longer, it’s about using a lot of naturally gluten free foods, trying to emphasise to restaurants that you’d rather be eating fruits and vegetables, fresh meat, grains like rice, potatoes. It’s just making the best you can and asking about things like sauce, how meals are prepared and trying to apply those gluten free principals wherever you are.
What would you like to see more of in the future of treatment and management of Coeliac Disease?
I think within the nutritional side of it, my interest is trying to make adopting the diet as easy as possible. We’re looking at group sessions for people who are newly diagnosed this approach may have benefits over individual sessions in that there is peer support and people will realise their not alone in their diagnosis of Coeliac disease..
I would like to see us working with industry more to develop a wider range of gluten free products on prescription. I think working with gluten free prescriptions, needs to maybe be reformed slightly, it’s great that we have those items, but potentially there are a number of different ways of looking at it to make it easier: it could be a pharmacy led service, so you don’t necessarily have to see your GP to get a prescription every time and the pharmacy would deal with that, have a wider range of standardised products available so they’re used more efficiently and effectively.
There are a number of things from a dietary perspective that I think we need to look at, specifically, who needs a super sensitive approach? Are there other standardised blood tests that we need to use to make sure that people who are sensitive are picked up quickly?
So there are a number of things I’d like to look for in the future. Hopefully it’s going to improve the experience that people have with their diagnosis and getting them back out there doing what they want as quickly as possible.
Nick’s eight principals for avoiding cross contamination:
- Wipe down surfaces before preparing food.
- Wash hands before handling gluten free food, especially after other food preparation.
- Use clean pots and pans, you don’t need to have a separate set of pots for a gluten free diet just make sure they’re clean before use.
- Use separate utensils for serving gluten free and gluten containing foods.
- Use a separate toaster for gluten and gluten free bread. Alternatively, use toaster bags.
- Always cut or prepare gluten free bread on a separate board or plate.
- Never remove batter from a piece of fish; even though you’ve removed the batter the fish will be cross-contaminated. The same principal applies to chips, do not eat chips which have been fried in the same oil as a gluten containing product such as onion rings.
- Have a separate butter and jam