Free from perspective

It’s the eve of Coeliac Awareness Week, gluten-related stories are starting to appear in the media, and I look forward to seeing what emerges in the coming days. Social media has already been a hive of activity concerning an article in the Evening Standard written by Wheat Out’s Miranda Bryant this week, but another piece which caught my eye was this piece in the Guardian, written by the Voice of Young Science Network’s Victoria Murphy. 

In it, she argues that ‘free from’ messages ‘misinform customers about health risks’ and that supermarkets are ‘playing on people’s fears’. She is particularly interested in MSG and aspartame, which she states are both ‘safe’. Quite bafflingly, she argues that supermarkets need ‘to promote evidence’. I’m not entirely sure why supermarkets have borne the brunt of this attack, given food manufacturers in general make these kinds of statements on their foods, but anyway ... 

Let me say upfront I have faith in scientific method, and that I’m in wholehearted support of the rationalists and scientists concerning those notorious subjects which typically exercise them – homeopathy and vaccines, for instance. 

But when scientists see only science, science and nothing but science, perspective can be lost. The whole article is founded on a basis that ‘free from’ messages are exclusively about science and ‘safety’ – and they are not. 

There are many reasons people need or choose to avoid ingredients or products. Here are some: food allergies (eg nuts), food intolerance (lactose), coeliac disease (gluten), ethical reasons (meat or animal produce, or meat reared / slaughtered in particular ways), religious sensibilities (certain animal products again, alcohol, methods of food preparation … ), environmental concerns (food transported by air, grown under certain conditions, sustainability …), palatability (many don’t like artificial or supplementary flavouring – aspartame tastes grim to many …) and so on. 

Free From or similar messaging can help all these consumers. 

As for parabens, a class of preservatives used in cosmetic substances, I agree that lack of safety has not been proven, but concerns remain, enough for the European Commission’s Scientific Committee for Consumer Safety to decide last year to look again at the evidence in detail. Whatever the outcome, some people are allergic to parabens – they are on the testing panels used by dermatologists to identify contact allergens – and ‘parabens free’ labelling is of great reassurance to them. 

The article presupposes that consumers are only interested in products which are not going to harm them and that labelling messages are only about medical concerns, and is based on a blinkered science-only starting point – a dogma which fails to take into account what people actually feel, or what their personal sensibilities are, or their views of the world, or their individual tastes, which don’t fit into the right-wrong, yes-no framework scientists sometimes struggle to see past. 

Disappointingly, the author of the piece fails to credit consumers with much savvy, either. Common sense ought to tell us that ‘free from’ messaging does not always imply medical undesirability or lack of safety – does ‘calorie free’ messaging promote the idea that calories are out to get you? 

But OK, fair enough, some may see ‘free from artificial sweeteners’ or (of course) ‘gluten free’ and think those things are universally bad – I’ve no doubt that this happens and yes it is the duty of food manufacturers to not mislead. But it is this fact, in that case, which needs to be communicated to consumers. Why advocate the removal of messages simply because some may misinterpret them? 

Breathtakingly, in their open letter to the main supermarkets, the VofYS accuse their use of what they call ‘negative marketing’ as ‘short sighted’. 

A sweeping undermining of ‘free from’ messaging – which many have come to rely on for any number of reasons – is what is in my view short-sighted, and this righteous attack which fails to consider the full picture is hardly the way forward.

Not nuts and not nuts

Last week supermarket Booths withdrew some batches of its Whole Hearted Roasted Monkey Nuts due to an error in allergen information: “Monkey nuts” is an alternative term for peanuts, but the word “peanuts” was not declared anywhere on the label.

The reactions to this were predictable, but one of the ones to catch my eye was from Dr Clare Gerada, who is the Chair of the Royal College of GPs. On her Twitter stream she called it “madness”, “beyond nuts” and “a sad reflection of how ridiculous we have become”.

Although peanuts are legumes (like beans, peas, chickpeas) rather than nuts, we’re generally guilty of treating them as and referring to them as nuts in an everyday context. Allergen labelling law, however, maintains the distinction rightly and clearly: peanuts are one of the 14 allergens which must be declared on labelling, and nuts (collectively - eg Brazils, hazelnuts) are another. You may react to one or the other – or both.

Clause 30 from the FSAGuidance on Allergen and Miscellaneous Labelling Provisions is worth quoting:

Whilst these may also be commonly referred to as ground nuts or monkey nuts, the term “peanuts” [their emphasis] should be used for allergen labelling purposes, as this is the term specified in Directive 2000/13/EC …

The product’s labelling fell foul of this, and was rightly withdrawn, as silly as it may seem at first consideration.

This is not about single-ingredient products having to declare the allergen they contain twice. A carton of milk labelled ‘milk’ does not need an allergy box reading ‘contains milk’, providing the word ‘milk’ appears on the front and not, say, ‘bovine udder juice’ – although Asda did slip up on this several years ago, and of course the Daily Mail duly ‘milked’ it for all its worth (throwing in some ignorance concerning food hypersensitivity for good measure). No, it’s just about ensuring the allergen is declared somewhere as the law requires it to be – and in this case it wasn’t.

Since I started compiling this piece, the brilliant allergy blogger Louise Jones has posted on the subject, with typical no-nonsense clarity. As she points out, this wasn’t a case of “health and safety gone mad”, but a sign that we have (and indeed should have) a zero-tolerance approach to allergy labelling slip-ups – and that even the most ‘safe’-seeming mistake should be dealt with, “to ensure that the measures protecting allergic consumers don’t begin to erode”. I agree. This is life or death for some people, remember.

The comments from Gerada reminded me of a previous time I spotted a prominent doctor making what I considered ill-advised remarks concerning food sensitivities, and which I blogged about in the early, far stroppier days of this blog. Dr Max Pemberton, then, showed some lack of understanding of lactose intolerance and towards those who felt food was making them ill – and I can’t help feeling that Gerada may to some extent have revealed something similar in perhaps not fully grasping how valuable allergen labelling legislation is, and as a consequence the reality of life with a serious food allergy.

Another more recent example concerned Dr Des Spence, writing in the British Medical Journal, and laying into the whole allergy ‘industry’ and questioning non-coeliac gluten intolerance – a subject Michelle Berriedale-Johnson addressed a few months ago on the FoodsMatter Blog.

We often hear that doctors don’t ‘get’ food allergy and intolerance, and while I’ve heard enough stories to know that this can absolutely be true, sometimes my instinct is to defend GPs when they’re accused of this – they’re overworked, receive little education of allergy at medical school, and so on. But when doctors react dismissively or sceptically like this, or make what seems a knee-jerk assessment, I start to be pulled back the other way, and begin to wonder how bad the picture really might be among our doctors – what the ‘culture’ of attitudes towards food hypersensitivity is among the medical fraternity in general, how doctors really look upon those suffering or who believe they are suffering.

“We are mad in the West,” says Gerada of the withdrawal of the monkey nuts. We’re really not. We have terrific allergen labelling in the EU, and evidently a good mechanism in place to ensure problems are quickly resolved, with some good allergy charities like the Anaphylaxis Campaign and Allergy UK who are quick to alert their members to a potential problem. It’s a pity that the chair of the RCGP hasn’t seen that side of the story.

Fads, toilets and ‘free from’

Somebody called Stacie Stewart on a television show called Food Glorious Food said something about eating gluten being worth it for a day on the loo.

The online floodgates opened, of course. She was called stupid; she was called a moron; she was called shameful.

The Happy Coeliac – temporarily suspending living up to her name – shared her thoughts in a much commented-on blog here, which summarises the event itself and captures the resulting online mood quite well.

I didn’t watch the clip for four days. I’ve watched it now. You can do so here until mid-April (15:30ish in; after the irritating ads).

It’s a difficult one to judge, because coeliac isn’t mentioned, and it’s not clear whether the man in the clip is gluten sensitive. From Stewart’s comment one could easily infer he is, and that she understands diarrhoea is a symptom in such cases. Since, we've learned that he wasn’t coeliac. So why did she say what she said? I really don’t know – perhaps she’d merely assumed he was, or perhaps he’d told her gluten didn’t agree with him, or something – but it strikes me that it was meant lightly, was delivered off-the-cuff and clearly was not intended to offend, albeit perhaps ignorant of the longer-term effects in some.

That alleged ignorance seems to have got a lot of backs up, but in my experience a vast amount of ordinary people do know that coeliacs cannot eat bread, cake, pasta and more, do know that it can give them the trots, but do not know about the internal or lasting damage gluten can cause coeliacs, and view it much as lactose to lactose intolerants, for whom, with a few exceptions, a day on the loo is pretty much as bad as it gets. Can we blame her for this, if true in her case? Can you honestly say that you know every in and every out of diabetes? Of kidney disease? Not everyone can be a doctor when it comes to other people’s diseases.

She works with food, and she should arguably know more than the average punter, I agree – but in that she may not she is hardly unique. Ignorance should not automatically be seen as a disgraceful sin: rather a sign that work remains to be done.

Stewart apologised on Twitter, although perhaps was a little slow to do so. As I've suggested, she took much flak online – some of it unpleasant, though sadly that’s hardly unusual these days, and has shown some signs of struggling to deal with it, though has mostly managed it well. Carol Vorderman, whose voiceover described gluten-free as a fad, copped some of it too: I have no time for her detox plans, but her crime on this occasion, as far as I can see, appears to have been that of reading from a script given to her by her employers.

(A fad diet is a diet which enjoys temporary popularity, then wanes. GF will always be here to some extent due to necessity, and it is obviously never faddish in the case of CD, but it is unlikely to always be popular among ‘lifestyle’ avoiders or weight-loss dieters, as misguided as they may or may not be, so it may well eventually prove itself to have been a fad among these groups. Seems to me, though, that this can only be decided retrospectively, so it was wrong of Vorderman’s scriptwriter to describe it so, but only on this basis, in my view. ‘Trend’ would have been a better word, for it is ongoing, but even that is unsatisfactory, and requires the same clarification: that for some it is ‘trendy’, but for others medical necessity. As often is the case with these matters, conveying information accurately is time-consuming, and the simple option gets chosen. This has echoes of newspaper articles describing coeliac disease an ‘allergy’ or ‘intolerance’: not strictly true, but easier than getting embroiled in an explanation of autoimmune.)

The blame as I see it lies with the producers of this show. Any food show in which health is discussed should be vetted by a dietitian and/or doctor before broadcast. I doubt this happened. Had it, the silly quip would surely have been edited out, or a voiceover added to clarify the scenario. A dietitian would have noticed that using the word ‘fad’ might be inflammatory, open to misinterpretation and neither fully nor accurately representative. FGF, of course, have received their share of complaints: their possibly not-sincere-enough apology on their Facebook page seems to underestimate the upset caused.

They have missed some points. The criticisms levelled at them concerning lack of research seem fair and have not been addressed. There was lack of clarity in the situation; context was not properly given. An apology on FB is clearly insufficient: a clarification on a forthcoming episode really would be. Events like this don’t help the ‘cause’ at all. Some people’s views of gluten-avoiders as fussy eaters will have been reinforced by the broadcast – something which justifiably makes coeliacs want to bang their heads on the nearest wall – and someone, somewhere, will have been left with the idea that it is not as serious as they’d been led to believe.

This is maddening, I know, because it sets us back, and it undermines on many levels, but sometimes I think deep breaths before reaction are required. Because I also fear that there has been damage to the perception among ordinary folk of coeliacs as really very angry people – witness some of the responses to links given above, but also go search for it on Twitter. While some of the comment has been well observed, some of it has been undoubtedly OTT and lacking perspective. I’ve seen demands for apologies made of Stewart by people who in my view should be instead offering her one. I know this stuff is vitally important, but people will fear getting involved in ‘free from’ or engaging with the community if we react like this: we cannot afford to scare people away.

Stacie was perhaps ignorant, but this is not intended as an insult and it shouldn’t always be thought of as one. She merely didn’t know about ‘free from’ – that it could taste great, for example. She later learned that it could, and appeared to admit she’d been wrong: a good thing. Many long-standing free-frommers will know that it hasn’t always been so, and that improvements over the last decade have been remarkable. Some people are still learning about this. It takes time.

Quite why a diarrhoea joke was considered apt for a food show, I probably won’t ever know, but I do feel there are far more deserving targets for our ire than a seemingly fun, sparky girl whose unintentionally flippant remark failed to end up on the cutting room floor where it belonged, and whose employers have been cavalier with their editing and production.

As the bluster dies down, among the questions we need to ask is whether FGF is now more likely or less likely to feature special diets or ‘free from’ food on their show again, and I suspect the answer is the latter.

Gluten free is ‘dead’: some analogies

It’s a year and a bit since ‘gluten free’ labelling changeover became official. Although I’m aware of some of the problems it has caused (e.g. the Walkers case), I still approve of what has happened, and feel it has bedded in reasonably. I understand confusion can and does still arise because ‘gluten free’ labelling law isn’t always intuitively compatabile with the allergen labelling laws which preceded them (it’s not unheard of to come across a product labelled both ‘gluten free’ and ‘contains barley’), but I still feel that’s an inevitability of the complexity of the subject and not the fault of those behind the new(ish) labelling law, per se.

There is, though, a form of ‘silent’ or casual confusion about the term ‘gluten free’, which manifests itself subtly, and which is fairly common. That, and the potential problems associated with it, is what I want to explore in this post.

Playing dead

A reminder: ‘gluten free’ now describes a food with 20 parts per million (ppm) or fewer of gluten. Anything above 20ppm is not gluten free. (I know we have the elusive ‘very low gluten’, but that’s still not ‘gluten free’.) ‘Gluten free’ is not a specific point in the 0-20ppm range: it is anywhere within it, no matter where.

This is important: what has happened is that the state of ‘gluten-free-ness’, if we can call it that, has been made absolute by labelling laws. A product is either ‘gluten free’ or it is not. There are only two possible states. And in this it mirrors other absolute adjectives, such as dead, pregnant, perfect, essential or unique.

Let’s take ‘dead’. You are either dead, or you are not dead. One cannot be very dead, quite dead, or a bit dead. Talk of someone being ‘completely dead’ and you’re using one word too many. Dead is absolute, and so unqualifiable.

Well, so is ‘gluten free’. It’s easy to look upon a biscuit which tests at 5ppm as ‘more’ ‘gluten free’ than one which tests at 15ppm, but that’s no longer true. It may have a lower gluten content, but it is not ‘more’ ‘gluten free’, as counter-intuitive as that may sound.

Similarly, your great-grandfather is not ‘more dead’ than the fly I just swatted. He has merely been dead for a longer period of time, rest his soul.

Let’s try the pregnancy analogy. A woman at eight months is at a more advanced stage of her pregnancy than a woman at one month, but she is not ‘more pregnant’ than her.

So: Both dead, both pregnant, both ‘gluten free’. When it comes to foods and labelling, there are no degrees of ‘gluten-free’. It just either is or isn’t. Dead or alive. Pregnant or not.

Because ‘gluten content’ is a number, and ‘gluten-free-ness’ is a yes-or-no, the former is best imagined on a scale, and the latter as a division of two zones.

And so a final analogy: you are not ‘more French’ if you are born and bred in Dover or ‘more British’ if you are born and bred in John o’Groats – you are equally British so long as you fall within the ‘zone’ of Britain.

Similarly with Gluten Free Land. If you live in 3ppm-ville or 19ppm-on-sea, you are a ‘gluten free’ national – no ifs nor buts, no matter how ‘close’ you are to Not Gluten Free Land’s border.

With me?

Does it matter?

I think so, because using terms such as ‘completely gluten free’ and ‘100% gluten free’ risks misleading and confusion.

My argument is we shouldn’t be asking ‘Are you 100% gluten free?’ because the automatic, can-do answer is ‘Yes, we’re 100% gluten free!’ – and the temptation could follow to trumpet that inappropriately or even add it to labelling. It could be infectious: “100% gluten free” trumps a competitor who is merely “gluten free”, after all, and who wants to be left behind in the newly competitive arena of ‘free from’?

When you ask such a question – and I’ve seen and heard it a fair bit online – you risk either instilling doubt in a possibly safe establishment or producer, or else paranoia that there is some other loftier standard of gluten-free-ness to be met, when there is none. “What? We’re only ‘gluten-free’? Oh balls! We need to be ‘absolutely totally gluten-free’, not just ‘gluten free’!”

There should be no degrees of ‘gluten-free-ness’ and thankfully, the law should help protect against it. As far as labelling is concerned, qualification of the term ‘gluten free’ is not even allowed, as page 15 of Food Standards Agency’s Guidance on the Composition and Labelling of Foodstuffs Suitable for People Intolerant to Gluten will tell you. I’ve been unable, though, to find an example on actual packaging (but let me know if you have seen some).

Elsewhere, though, it crops up quite a bit: Just so Natural call their products ‘completely gluten free’, the supplement company Natures Whey regularly describe their products as ‘one hundred percent coeliac compatible’, and even Coeliac UK have fallen foul, dubbing Hambleton Ales ‘totally gluten free’. My sin was describing a dish I cooked as totally GF, but I know I’ve messed up in conversation too.

Another consequence of this is that some could misinterpret an expression such as ‘completely’ or ‘100% gluten free’ as meaning 0ppm: a problem, given we can’t test to this absolute degree of accuracy, and cannot give such a guarantee of zero gluten content to any food at all.

So it’s either gluten free (0-20ppm) or not (>20ppm), no ‘completely’ nor ‘totally’ nor anything else, and if you happen to feel resistant to this, well, at least as far as food labelling is concerned, it’s the law – but even outside labelling, I feel it’s something we would benefit from honouring. It keeps things simple and clear, and we know that complexity and doubt breeds confusion and misinformation.

Gluten-free is ‘dead’, then, but long live gluten-free? Over to you …

How to get your food intolerance test in the papers

First, look for a study to come along, on which you can peg a press release. This one might do. It looks at the association between dichlorophenols – chemicals used to chlorinate water – and food allergic sensitisation, ie IgE-mediated food allergy. The study made the news on the 3^rd December 2012.

Food allergy triggered by IgE antibodies can be deadly, especially in the case of nuts. It’s the big one, responsible for causing anaphylaxis in susceptible individuals. You’ve heard those tragic stories, haven’t you? They make the news occasionally, typically it’s a teenager involved, often with asthma, a life is lost, and we all feel wretched and helpless. Often food allergy is milder – lips tingling, light wheezing, red rashes – but the key thing is that it is these IgE-triggered sensitivities that the study looked at. The conclusion was that there was an association between the two: excessive use of these water purifying chemicals could be a contributory factor to increasing food allergy.

Food intolerances, as the wise among you will know, are entirely different. They can be caused by enzyme deficiency (as in lactose intolerance), for instance, but other mechanisms are unclear in idiopathic cases, and on the whole we’re talking bowel symptoms, headaches and such like; they generally can be a bit harder to pin down, and the effects less serious. Nothing as dramatic as plunging blood pressure and inability to breathe, you understand. IgE antibodies are in no way involved.

YorkTest is a laboratory offering food intolerance tests based on measurements of IgG antibodies – a class of antibody distinct to IgE. The IgG thing was an interesting, emerging area about a decade ago, and when I first looked into it when researching my book on food intolerance, it seemed to show some promise, and in the book I was mildly optimistic. The theory was that raised IgG antibodies in the blood might indicate a milder form of food-sensitivity reaction – food intolerance, essentially – much in the way raised IgE antibodies in the blood might indicate a more serious food-sensitivity reaction – allergy.

The research YorkTest Laboratories supply in support of IgG testing for food intolerance totals a few papers. The audits in particular are poor and of little value, to my mind.

The good trial – now looking increasingly isolated with the passage of time – is the well-known Whorwell of 2004 published in Gut which concluded that “Food elimination based on IgG antibodies may be effective in reducing IBS symptoms and is worthy of further biomedical research.” But this was just one trial, looking only at irritable bowel. The authors themselves later stated that “they may not be relevant in food intolerance in general” – a comment you’re unlikely to find on the YorkTest site.

Further good studies in support of IgG have not followed in the years since, and brains bigger than mine have concluded that the evidence is insufficient. (See Food Sensitivity Testing page at the top for links to studies and expert opinion.)

Back to Water Purification Chemicals …

On the 5^th December – two days after the news about food allergy and water purification chemicals – I received a press release from Yorktest’s PRs, CCD, titled “Chlorine in tap water linked to increase in number of people developing food intolerances”. 

The opening lines:

Chlorine in tap water has been linked to the rising number of people developing food allergies and intolerances, a study has revealed.

Researchers found adults with high levels of dichlorophenol – a chemical by-product of chlorine – in their urine, were up to 80 per cent more likely to have a food allergy or intolerance.

The title is plainly inaccurate, and the subsequent lines partly so. The research linked chlorine to food allergy – not intolerance.

The press release continued, abandoning allergy and pressing forward with the self-serving intolerance angle. “Help is at hand from YorkTest,” we were told, whose test can “uncover potential food and drink triggers”.

The aim of a press release, of course, is to get the client publicity and – bingo – six days later, this appeared in the Daily Mirror (readership: 3 million plus). It’s an article alternately about allergies and intolerances, including some sad stories, which mentions several individuals and bodies, including YorkTest – the apparent inspiration for the story via the press release above. Job done, then.

A PR’s job is often a tunnel-vision one: to get publicity for the client. Newspapers and magazines are filled these days with material sourced from or inspired by press releases, and it’s a depressing state of affairs. (Read Nick Davies’ Flat Earth News for more.)

There are a lot of reasons for this. I know folk get aggravated when writers confuse or conflate or inappropriately mix up allergy, intolerance and coeliac, and there was a time, of course, when a journalist might have researched the material in a press release in greater depth and more critically, and spend more time in general background research. They could afford to. Rates for journalism were good. Now they are poor. To make a living, you’ve got to ‘churn’ articles quickly. Also, health journalists don’t often have medical backgrounds (I don’t). Editors are increasingly under pressure to just get pages filled, and will convey that pressure to the writer. Journos are therefore increasingly vulnerable to being misled by press releases. If you’re pressured and overworked, you cut corners; I know, as I have.

The losers are you, the readers – who don’t get the journalism you deserve, and are subject to being confused about conflicting advice and misinformation appearing in various media.

And another one … 

This blog was going to end hereabouts, but as I write this on Sunday the 20^th another email and press release from CCD has just arrived.

It is pegged to Blue Monday – the third Monday of January – a pseudo-mathematical PR-industry fabrication which Ben Goldacre has already demolished with panache, which crops up in the media annually (hugely disappointingly, the British Dietetic Association have got involved with it this year) – and whose whole construct is arguably deeply insulting and unhelpful to those with genuine depression or related illness, as psychologist Dean Burnett has explained so eloquently.

The email (edited extracts):

“Welcome to the most depressing day of the year! Monday 21st January … has a reputation of being the most sullen day ... A combination of post-christmas blues, dark evenings and unpaid credit card bills all contribute to making today the most depressed.”

But hold on a minute: this “sullen mood may be due to your diet” I am informed. “Why not use today of all days to find out if food intolerances are making today your most depressing day?” Because, as usual, “… help is at hand from YorkTest …” even though there’s no study linking depression and IgG antibodies on their science page, and none that I know of in the literature.

Whether this ends up in some form in the media remains to be seen (do let me know if you see anything). Meanwhile, I’ll try to find some comfort in the fact that, while my mood may indeed be sullen right now, I do not need one of YorkTest's £299 Food&DrinkScan Programmes to know that it’s nothing to do with food intolerance.