BRITISH BROADCASTING CORPORATION
RADIO SCIENCE UNIT
CASE NOTES
Programme 6. - Allergies
RADIO 4
THURSDAY 24/10/06 2100-2130
PRESENTER:
MARK PORTER
REPORTER: KATY HICKMAN
CONTRIBUTORS:
GEORGIO LOCATELLI
PLAXY LOCATELLI
DITA LOCATELLI
JANE LUCAS
ALLAN COLVER
TONY WILLIAMS
CHRISTINE STEVENS
JOHN STEVENS
PRODUCER:
KATY HICKMAN
NOT CHECKED AS BROADCAST
PORTER
Hello. Allergies, particularly to foods, are a growing problem across the developed world. Here in the UK they've increased five fold since the early '80s and the number of children allergic to peanuts has trebled in the last decade alone. In today's programme I'll be finding out what it's like to live with a potentially life threatening allergy. We visit the home of restaurateur Giorgio Locatelli and his wife, Plaxy, and witness first hand the challenge of cooking for their daughter Dita.
PLAXY LOCATELLI
The main things she's allergic to are nuts, tomatoes, rice, eggs, fruit - all fruit - all fish and she can't eat pulses - god what can you eat Dita?
PORTER
And I'll be finding out about a new treatment - oral immunotherapy - that can cure allergies and widely available on the continent but which is barely used this side of the channel.
But first to the allergy unit at Southampton General Hospital where paediatric allergist Dr Jane Lucas has a follow up appointment with Polly and her mother Beverley.
ACTUALITY
LUCAS
Hello Polly, have you had any problems with accidental … with peanuts?
POLLY
No, I have my epi-pen with me all the time and I generally avoid anything - and most food things have the warnings on them so you can quite easily avoid.
LUCAS
We saw you a few years ago and managed to ascertain that you'd outgrown your egg and milk allergies, have you managed to introduce egg and milk into your normal diet now?
POLLY
Yeah, milk I have in my cereal or in chocolate and things. Egg I can eat if it's cooked, so like in cakes or something.
PORTER
Jane, initially when somebody like Polly comes along to your clinic with a story that suggests that they may be allergic to some foods how do you go about confirming that?
LUCAS
Well the first thing to do is to take a good history, we've no perfect test and so the tests are really a confirmation for what we suspect and what the patient tells us. So, for example, early on Polly was actually very unwell as a baby when she had the milk and the test would have been based on that story.
PORTER
But people can be upset by milk but it doesn't necessarily mean that they're allergic to it, I'm thinking of intolerances here, what's the difference between those two?
LUCAS
That's right. Allergies have got a very specific meaning medically and that's that you have an immunological reaction to the food, so there's some interaction between your immune system and the food that you're eating. Usually it's an antibody called IGE and that's the most common form of allergy and that's the form of allergy that our tests are based on, so the skin test and the blood test where we measure IGE in the blood.
PORTER
Polly, how did you know that you had a problem with allergies in the first place, what were the first sign of trouble?
POLLY
Well …
BEVERLEY
Shall I step in here as her mother? She was very young, she was only a baby, when we first discovered that she had allergies. And all the classic symptoms of itchy lips and swollen face and she would be sick as well if she had, in those days, milk, dairy products and fish - that sort of thing. She gets a funny voice and she can get a little bit wheezy as well.
PORTER
Jane, can you explain what's happening during these severe reactions?
LUCAS
The food is causing the immune system to react in an admirable way really, the IGE - the antibody - to the allergen on the mask cells cause mask cells to release the granules that are in the …
PORTER
Mask cells being part of our natural immune defence, and they basically explode.
LUCAS
They explode releasing all their granules and actually making some of those substances as they go along. The most potent of which is histamine and which causes blood vessels to dilate and become leaky, causes your airwaves to constrict and so you become wheezy.
PORTER
Which of course is what you want, if something's happened locally you want your blood to go there, you want all the new soldiers to line up and be able to escape from the blood vessels, you just don't want it to happen all throughout your body.
LUCAS
Throughout your body is not what you want. And you don't want it to happen to foods because that's a normal part of your life.
PORTER
A nasty invader but not a peanut.
LUCAS
Absolutely. For parasites.
PORTER
So they get this potentially catastrophic release of this chemical.
LUCAS
The worst scenario could be a potentially life threatening event known as anaphylactic shock.
PORTER
Every parent's nightmare. And one all too familiar to London chef Georgio Locatelli. In a cruel twist of fate his daughter Dita is severely allergic to hundreds of different foods, including many of his favourite dishes.
Katy Hickman joined Georgio and his wife Plaxy as they prepared Dita's evening meal.
GEORGIO LOCATELLI
Okay, so we're going to do first the chocolate cake and then the pasta [indistinct word]. This is a special chocolate cake which is eggless, she loves chocolate. Sugar and the flour. Okay.
HICKMAN
Do you have quite a sweet tooth Dita?
DITA LOCATELLI
Yes, can only buy chocolates because the sweets all have additives and things like that inside which I'm allergic to.
HICKMAN
So your choice is quite limited but you still have a choice?
DITA LOCATELLI
Yes. Galaxy.
GEORGIO LOCATELLI
Yeah that's it on some days she has a galaxy. Okay you have to mix all that together Dita.
DITA LOCATELLI
With the spoon?
GEORGIO LOCATELLI
Yeah.
PLAXY LOCATELLI
The main things she's allergic to are nuts, tomatoes, rice, eggs, fruit …
HICKMAN
All fruit?
PLAXY LOCATELLI
All fruit. All fish. The list is kind of a bit endless.
GEORGIO LOCATELLI
She had a bad time with some spinach one time didn't she?
PLAXY LOCATELLI
She can't really eat spinach and she can't eat pulses.
HICKMAN
So what can she eat?
PLAXY LOCATELLI
She can eat chicken, beef and pork, she can eat pasta, without egg obviously. And there's about two vegetables she can eat. She can eat green beans, she can eat broccoli - but it doesn't go down very well. God what can you eat Dita? It's a minefield actually, it really, really is and sometimes you think oh we're really safe with that, we know she can have it and then she's not okay with it.
GEORGIO LOCATELLI
Okay so we're going to put everything together now Dita. You put in…?
DITA LOCATELLI
I'll put it in.
GEORGIO LOCATELLI
Okay. [Indistinct words]
PLAXY LOCATELLI
Shop bought for her is impossible, which in a way is a good thing, you know, but what worries me is when she goes to secondary school and they all say oh let's go and have a sandwich and if she goes into any of your standard sandwich shops they all have egg, they all have tomato.
HICKMAN
I you worried about the cross contamination, so even if she doesn't have egg it can be prepared on a surface with egg?
PLAXY LOCATELLI
Yeah absolutely, absolutely.
HICKMAN
And that's enough to cause a …?
PLAXY LOCATELLI
Oh god yeah. We've only just been able to start cooking rice, if we open all the doors and put all the extractors on and she has to go out of the room. So it's not really worth it, you know it's not - I mean it has restricted everybody's diet in a way. It's a fairly dramatic impact on your life.
DITA LOCATELLI
It looks so yummy.
GEORGIO LOCATELLI
That should be okay.
HICKMAN
When did you first realise that she was allergic to [indistinct words] …?
PLAXY LOCATELLI
When she was a baby. When she had an enormous anaphylactic reaction to salmon and we had a sort of disastrous rush to a hospital and it was France - not knowing how to get there and not knowing where we were. And she'd swelled up and stopped breathing and - well we managed to get to hospital purely by chance because we flagged down a passing fire engine, they gave her a shot of adrenaline and antihistamines and it was like magic. And then it's the real shock of then being told right you have to carry two epi-pens with you everywhere you go, you have to carry antihistamines and it's just a complete change of kind of your whole life.
HICKMAN
Since her first anaphylactic shock has she had many others - you say you carry two epi-pens, have you had to use them?
PLAXY LOCATELLI
We have yeah, we've used them usually actually the times we've had to use them was on holiday where obviously you're eating out a lot more and people say yes we understand and they never truly do. Last year was the worst, how many did we use - four?
DITA LOCATELLI
Four.
HICKMAN
What are you doing now?
GEORGIO LACTELLI
I'm just going to finish up the pesto without pine nuts and put some olive oil in there.
HICKMAN
How's the school reacted to having epi-pens in school?
PLAXY LOCATELLI
They've been brilliant, they've been absolutely brilliant but I have to say that we went to see an awful lot of schools who weren't brilliant and who insisted that she have lunch on her own in the headmaster's office when she was four and a half years old and treated very differently and it really was beginning to make her very introverted and very unhappy.
DITA LOCATELLI
There was someone who died when she went on holiday in our form - how long was it ago?
PLAXY LOCATELLI
Two years ago.
DITA LOCATELLI
Two years ago - she died on holiday from a nut allergy.
PLAXY LOCATELLI
She ate some cheese didn't she and it had nuts in it.
DITA LOCATELLI
It had nuts in it.
PLAXY LOCATELLI
There are so many people, I mean her school alone has - there are 12 or 15 kids who have got serious nut allergies and never heard of it before. I have a son of 18 - there was never talk of nut allergy or anything like that.
DITA LOCATELLI
Can I have a go?
GEORGIO LOCATELLI
Yeah. This is what she can have as a pasta because it's got no eggs or anything else. Pasta is always quite a good thing to do with kids they like it, we have parmesan sticking on the ceiling as well after.
HICKMAN
The lovely thing about eating together and sharing a meal together is quite difficult for someone with allergies.
GEORGIO LOCATELLI
That is the major problem because you can't partake when everybody else wants to go out and surely when she becomes a student and her friends are going to go for a kebab that will be very difficult for her, it would be almost impossible.
HICKMAN
So what's going to happen when Dita gets older, do you worry about it, do you think about it?
PLAXY LOCATELLI
I worry about it all the time and I always think oh poor kid she's going to have her mother trailing behind her with bags and thermoses and I do particularly worry the whole time about when she's older and well even to the extent you know you hear about people who kiss their boyfriends who've eaten a bag of nuts in the pub an hour before and they have terrible problems.
HICKMAN
No boyfriends Dita.
PLAXY LOCATELLI
Yeah well obviously no boyfriends, straight to the convent in Italy until she's 42 and then back home to live with mum I think.
GEORGIO LOCATELLI
The pesto was straight as you saw it - with just the leaves and the olive oil only and I add a bit of salt at the end and that's all I did and this is it. How is it Dita?
HICKMAN
Well she's nodding.
GEORGIO LOCATELLI
She's nodding, that's good.
PORTER
Jane, Dita's obviously got a very serious food allergy but how common are food allergies now that might cause these potentially serious anaphylactic reactions?
LUCAS
Well food allergies are actually very common in children, it's probably about 6-8% of infants and younger children have allergies.
PORTER
So as many as - what - 1 in 14-15, something like that?
LUCAS
Something like that. But because egg and milk allergies are usually outgrown by the time you get to seven or eight years of age it's only maybe 2% of children. There's also evidence that there's an increasing number of allergies. There was a study from the Isle of Wight from some years ago that showed that there was ½% of their population had peanut allergy, that's actually increased to nearer 1½% within a few years.
PORTER
Do we know why?
LUCAS
No we don't know why allergies are becoming more common. What we do know is they seem to be associated with a Western lifestyle. Some people have put this into an idea called the hygiene hypothesis which suggests it's something to do with our clean sanitised lifestyle, so our immune system isn't being challenged…
PORTER
Doesn't have enough to do yeah.
LUCAS
… to deal with the bacteria and so on. But that's a really very simplistic approach to it and we're now looking more deeply into the underlying immunological changes that are happening.
PORTER
So how do we manage children who've got this level of allergy? Presumably step one is obviously to do what they can to avoid coming into contact with the allergen.
LUCAS
That's right and it's advice from a dietician, from the allergy nurse, medical advice, all really aiming to avoid the foods but also to make sure that the diet is adequate in other ways.
PORTER
And what happens if they do accidentally become exposed?
LUCAS
The most important thing is that they need to be able to recognise the severity of it because the treatment depends on that. So for a large reaction we'd advise they would take an antihistamine as soon as possible.
PORTER
Just the tablet.
LUCAS
Just the tablet which they would need to carry at all times. But for someone having a severe reaction they need to be injected with adrenaline and the most common way that that's done- there are preloaded pens that contain a dose of adrenaline, give the adrenaline and call 999, shout for help.
PORTER
And the adrenaline works how?
LUCAS
It reverses most of the effects of histamine, so it causes the blood vessels to constrict and it relaxes the airways and the lungs so that it makes breathing easier.
PORTER
But there are people who question how common serious food allergies actually are. While as many as one in six parents believe their children have food allergies, one study suggests the real figure is more like 1 in 50. Allan Colver, professor of community child health at Newcastle University, also believes the dangers posed by such allergies may have been exaggerated.
COLVER
I conducted a study which looked between 1990 and 2000 at all the deaths in children under 16 in the United Kingdom and Ireland and I found that there were eight deaths, so that's slightly under an average of one death a year. Now of course that one death is an absolute tragedy for the family but nevertheless that number was I think very much smaller than many people had anticipated and I think even surprised me.
PORTER
You question the number of epi-pens that are prescribed for children with allergies -why?
COLVER
There is no clear evidence that in fact epi-pens prevent that very small number of deaths. In those deaths that I mentioned two of them in fact the children had received absolutely optimal treatment and still died. So that the idea that by having an epi-pen therefore everything is alright is in fact a slightly concerning message to give. The key message to give is that the child should go to hospital as soon as possible. One also knows from some of the studies that of course you may be given an epi-pen but it may be many years before you actually might be called upon to use it and in those circumstances the families very often find that in fact they are very anxious about giving such an epi-pen, it is after all an injection into a muscle, which they have to decide to do, so that a tremendous amount therefore of anxiety is created, not around just the food allergy but about the administration of this epi-pen and that one could move away from much of that anxiety by prescribing fewer but nevertheless emphasising the crucial point that a child should go to hospital quickly.
PORTER
Allan's findings there, Jane, suggest that life threatening reactions and indeed deaths are nowhere near as common as many parents and indeed many doctors might think. Do you think it matters if we're seen to overreact and are giving out too many epi-pens?
LUCAS
Well I don't think we are overreacting, I think the fact that we've got not many deaths, although we have an increasing number of people with allergies may reflect the fact that we're educating our parents and children how to avoid the foods and how to manage the situation if it arises. I think it has to be something that's a decision between the doctor and the parents as to whether they feel more anxious carrying it or whether they feel more anxious not to have any treatment to hand.
PORTER
How do you explain allergies like peanut allergies to parents? Obviously you want to make them aware enough of the potential risks without blowing them out of all proportion, it's a pretty fine path to tread isn't it.
LUCAS
There is and we have no way of knowing who's going to have a severe reaction the next time and just because you've had a mild reaction one time doesn't mean that you're not going to have a severe reaction the next time. So identifying that risk is actually quite difficult. What we do know is that there are certain foods in certain patient groups that are more at risk. So for example people with peanut allergy are at higher risk than some of the other food groups. And people with asthma are at a significantly higher risk of having a severe anaphylactic reaction or even death if they come into contact with the food.
PORTER
Now we hear that Polly's grown out of her milk and hopefully her egg allergy, is that common?
LUCAS
It is actually, it's about 80% of infants who have egg and milk allergy will have outgrown their allergy by the time they go to school. So that's an important reason why children need to be followed up with these allergies.
PORTER
Because presumably unless they're re-tested they're unlikely to find out that they've grown out - they're not going to go along and try it are they, that wouldn't make sense?
LUCAS
It would be a dangerous thing for them to do without having a blood test or a skin test to prove that it was safe for them to go ahead and try it. It's much less likely that she'll outgrow her nut allergy, it's probably only about 10, 15, maybe 20% of people outgrow those allergies. But even so from Polly's point of view 20% is very high because if we can undiagnose her she can stop carrying her epi-pen, so life would become much simpler.
PORTER
So how are we going to do that?
LUCAS
So what we're going to do first of all is a skin test and we have some solutions which contain an extract of the proteins in the food that she might be allergic to. A draw up of that solution is put on to her skin and then Rosy, who's our allergy nurse sister, will make a small scratch on the skin, if Polly's allergic we'd expect the skin to come up in a weal.
PORTER
Okay Rosy over to you, if you want to do the test.
ROSY
We're going to test you for egg, peanut and for the tree nuts - cashew, almond, hazel, walnut and brazil nut. And you said to me you're not sure whether kiwi fruit also causes you problems, so we've got a fresh kiwi fruit here, we're just going to put by each of the marks on your arm a very small amount of the allergen substance because we don't have a solution for the kiwi, we actually have a kiwi fruit here and we dip the little lancet into the kiwi fruit and take it straight out and just scratch Polly's skin.
PORTER
Can you feel that Polly, it's a little tiny minuscule scalpel blade isn't it? There's no blood yet.
ROSY
There is no blood. And then we have to wait 15 minutes, so we put the …
PORTER
Stopwatch.
ROSY
Stopwatch here.
PORTER
Jane, I was interested in your choice of kiwi because it seems that there are more reports of kiwi allergy.
LUCAS
Yes I've actually just completed a study of 400 people with kiwi fruit allergy in the UK and we found that it does appear to be an allergy that's increasing and although our previous knowledge was that it seemed to be a very mild allergen we found that in children with kiwi fruit allergy a high number of them have anaphylaxis - so severe reactions to the food.
PORTER
So if Polly passes this test now your next stage would be to allow her to eat nuts or…?
LUCAS
Neither the skin test nor the blood test are a 100% predictive and so the only way to confirm that she had truly outgrown an allergy would actually be to challenge her, which would involve bringing her into a hospital situation and giving her initially very tiny amounts of food to eat and increasing amounts whilst under medical and nursing observations.
ROSY
So the 15 minutes is up and we'll have a look and see what's happened to your arm. As far as the kiwi fruit's concerned you do appear to have an allergy to kiwi fruit, it's a weal which measures 10 millimetres by 5 millimetres. I'm afraid Polly you're still going to have to continue to avoid peanuts. As far as the tree nuts are concerned the cashew, the almond, the hazel and the walnut, have had no reaction to them at all, which would be great, it would mean you could maybe introduce them into your diet but only after you've had a food challenge. Well done Polly, I hope your arm isn't too itchy.
PORTER
Yeah it looks like you've been - looks like you've had your arm in some nettles there, does it feel itchy?
POLLY
Yeah.
PORTER
Polly are you surprised that you've still come up with the peanut, or were you expecting that?
POLLY
I was expecting that. The risk of peanut is much more than other nuts, so it's good to know that I should still be aware of it. Losing my dairy allergy it's been really useful because I can eat chocolate and just going out in general has been a lot easier because I can eat so much more, so if I go to a restaurant I don't have to be so aware.
PORTER
How important is following up children as they grow older with their allergies?
LUCAS
It's absolutely vital and in fact there's a great shortage of paediatric allergists and paediatric allergy clinics in this country, which is a big political and social issue. We've got a lot of children on restriction diets that needn't be because of poor follow up.
PORTER
Dr Jane Lucas. And there are serious concerns about cutbacks in specialist allergy service across the whole of the UK, including the unit at Southampton. Stretched at the best of times cuts are likely to mean that many children in Polly's situation miss out on specialist follow up and may never know if they're among the lucky ones who grow out of their allergies.
Now while children can grow out of them adults often grow into allergies. The basic treatment - a combination of allergen avoidance, antihistamines and adrenaline containing epi-pens is the same. But there's another approach used in adults that can offer a cure. Immunotherapy or desensitisation is widely used in the States and many countries in Europe. Dr Tony Williams is a consultant immunologist at Southampton, one of just a handful centres offering the treatment in the UK.
WILLIAMS
The principle is to administer the allergen extract to the individual such that they develop tolerance to that allergen. The best example would be bee and wasp allergy where we start with one five thousandth of an eventual sting and then we would eventually work up to two stings worth of the allergen in that individual.
CHRISTINE STEVENS
We're both allergic to bee venom and as beekeepers that can be something of a disadvantage.
WILLIAMS
Christine and John Stevens came to us and indeed following a conventional three year course of immunotherapy, both have proved us a success.
JOHN STEVENS
Christine was stung by one bee in the garden picking raspberries and within 10 minutes she'd go into a full scale anaphylactic reaction.
PORTER
And what did you notice at the time Christine?
CHRISTINE STEVENS
I began to feel peculiar and just really getting to the point of struggling for air and John came in and took one look at me and decided that the hospital might be a good place to go.
PORTER
So that was how your allergy to bee venom was detected. What happened in your case?
JOHN STEVENS
Well we continued you know with a couple of beehives and Christine took extreme care not to get stung - two gloves, two veils, two sweaters, you know, the whole thing. After a year or more I had exactly the same reaction, quite suddenly and Christine wheeled me swiftly down to the hospital.
PORTER
So since then you've both undergone immunotherapy, what did that involve?
CHRISTINE STEVENS
It involved coming down here every week for I think the first six or eight weeks, then every fortnight and then it gradually spread out to once every eight weeks over a period of three years, where we were given increasing doses of bee venom.
PORTER
And John the doses are given as tiny injections?
JOHN STEVENS
Tiny injections in alternating arms. The initial injection was a minute amount of bee venom but still enough to cause a reaction and we were then monitored for at least 30 minutes just to see how serious that reaction would be. Christine had several almost full scale allergic reactions, I just made a fuss.
PORTER
And how effective has it been?
CHRISTINE STEVENS
Pretty effective, certainly to the point where neither of us have had an anaphylactic reaction, although we have been stung since. We still both react a little but it's completely manageable, we can take an antihistamine and any reaction disappears within about 15 minutes.
PORTER
So that's all you need, the antihistamine now, you're not injecting yourselves or anything like that?
CHRISTINE STEVENS
Not at all.
PORTER
And do you still keep bees?
CHRISTINE STEVENS
Yes.
PORTER
So would you have gone for the desensitisation even if you hadn't have been beekeepers?
JOHN STEVENS
Definitely we would yes.
CHRISTINE STEVENS
It was driven home to us actually, one day we were on holiday in France, stopped for a picnic and a swarm of bees flew by, we were miles from anywhere in the middle of France and it was that as much as anything that said to us actually we need to do something about this whether or not we continue with beekeeping. And so it's made a huge difference in that sense because it means that we can live a completely normal life and not be paranoid about the possibility of getting stung by a bee in the garden or on a picnic or anywhere else.
WILLIAMS
There are a number of suggestions why this treatment works. It may be that the small incremental doses in addition to the other components in the vaccine are able to change the immune response in a way that's not comparable to a natural exposure of that particular allergen.
PORTER
And how effective is the treatment?
WILLIAMS
The efficacy has been estimated to bring about a 40% reduction in medication use and symptom score, typically for the well studied grass pollen allergies, part of hay fever. If you then turn to allergens such as cat, house dust mite, tree pollens, bee and wasp generally speaking you'd hope to help approximately 8 out of 10 people.
PORTER
Historically we seem to have lagged a bit behind mainland Europe in using desensitisation in certain people, why is that?
WILLIAMS
There's a degree of historical background there with regard to immunotherapy being quite well practised in the late '60s, early '70s and there was an investigation in the mid 1980s with regard to the safety of immunotherapy and what was found was that in those treated for severe asthma in particular a death rate was identified and over a 25 year period approximately 26 deaths were attributed to systemic immunotherapy. The key change in the UK was the provision of a national response to the safety concerns such that the advice for all those in the UK practising was to administer the immunisations to selected individuals outside of the asthma with a requirement for two hours stay post immunotherapy within the doctor's office. And those have limited the practicalities of service delivery in a way that wasn't specified across other European healthcare systems.
PORTER
Last month there were headlines in the newspapers talking about a new pill for treating hay fever, this is an oral type of desensitisation, how does that work and is it as effective as claimed?
WILLIAMS
Yes these are very exciting times with immunotherapy because the new emerging immunotherapy includes those that can be simply administered under the tongue and then after a period of time swallowed and that has proved to be both in paediatric and adult practice effective and much more safe.
PORTER
So does that mean that it can be literally taken by the patient at home?
WILLIAMS
That is the key change that's taking place, that once the tablet has been administered for the first or second dose within the hospital environment the safety concerns are such that we can now allow individuals to continue their treatment at home. The again European allergists are probably five years ahead of us with regard to their introduction, for example within France and Italy approximately half of their mite and pollen allergic individuals are on the tablet immunotherapy with a fraction in the UK is incredibly small and at the moment is probably restricted to clinical trials.
PORTER
That's a remarkable development.
WILLIAMS
It's absolutely incredible, the changes that may happen in the UK if immunotherapy is taken onboard are quite considerable.
PORTER
Dr Tony Williams on an exciting new development in allergy treatment yet to establish itself here in the UK.
If you want to listen to the programme again or if you want the recipe for Georgio Locatelli's delicious eggless chocolate cake then do log on to the website and that's bbc.co.uk/radio4.
Next week's programme is all about the interface between art and medicine; how hospitals are using music to improve health and speed up recovery.
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