Bad medicine: food intolerance

A few days ago Alex Gazzola pointed me to an article in the current issue of the BMJ by Dr Des Spence, a GP in Glasgow, laying into both the ‘allergy industry’ and the food industry for promoting food intolerance as a way to make money. You can read the article here and comment yourselves if you wish to.  (You can get a free 7 day subscription if you do not want to lay out a tenner on an on-going BMJ sub.)

There was nothing very new in what Dr Spence was saying (the science behind food intolerance is sparse and ‘allergy testers’ and the food industry are merely jumping on the bandwagon and conning a gullible public into spending huge sums on irrelevant tests and unnecessary ‘freefrom’ foods) but since it was appearing in the august pages of the BMJ I felt that I needed to make a response. In fact I was not the only one, as you will see if you read the article. However, if you do not want to go to the bother of logging in, what Dr Spence had to say is pretty clear from my comments on his article which I reproduce below.

 

In his piece on ‘Bad Medicine: Food Intolerance’ Dr Spence berates ‘the allergy industry’ for jumping on the profitable but totally ‘unscientific’ food intolerance/gluten-sensitivity bandwagon.

And he is certainly right about the ‘unscientific’. There is indeed very little scientific knowledge about food intolerance or non-coeliac gluten sensitivity. But the fact that we know little about them does not mean that they do not exist – merely that we do not know much about them. Until Copernicus discovered that the earth went round the sun we did not know about that either – but that had not stopped it doing so for billions of years.

While IgE mediated allergy (an immediate, immune system reaction such as peanut allergy), and classic coeliac disease, have been widely researched and are reasonably well understood, delayed reaction food sensitivity and ‘non-coeliac gluten sensitivity’ have scarcely been studied at all and are, therefore, scarcely understood at all.

However, there is a significant proportion of most Western populations who suffer from either chronic or intermittent, indeterminate, ‘idiopathic’ ill health (irritable bowel syndrome, fatigue, joint pains, chronic headache, low level depression etc etc etc). In the vast majority of these cases their GPs can provide them with neither an explanation nor a treatment for their conditions.

While some of these patients continue to suffer in silence (or to clog up their GPs waiting lists) others seek an answer elsewhere – some experiment with homeopathy, or yoga, or Traditional Chinese medicine, others attribute their ill health to a ‘food intolerance’ or, more recently, to gluten sensitivity.

(And before Dr Spence dismisses ‘gluten sensitivity’ as a industry driven fad, maybe he should read this paper, published early last year, by many of the most respected names in coeliac research, Spectrum of gluten-related disorders: consensus on new nomenclature and classification [1] – especially the concluding paragraph; a further article in this very journal last November [2] and take a look at the clinical trails now underway in Boston and in Naples. [3])

However, although attributing ill health to a food intolerance may seem an easy answer, actually pinpointing the offending food is far less easy. Currently ‘medical science’ has nothing to offer but an ‘elimination and challenge’ diet, a diagnostic tool that takes a great deal more time and commitment on the part of both the patient and their medical practitioner than either are usually prepared to commit to.

While IgG ‘allergy/intolerance’ tests (such as the York tests mentioned by Dr Spence) may be of dubious scientific validity (you do not have to be either allergic or intolerant to a food to create IgG antibodies to it) at least they do offer some guidance and eliminating the foods pinpointed by their tests does very often improve that person’s symptoms – although this may often have as much to do with focusing that person’s attention on what they are actually eating as it has to do with an intolerance.

Given that the average Western diet leaves a lot to be desired in terms of nutritional balance, adopting a diet with a more balanced nutritional profile may already be enough to favourably affect a sufferer’s health. An interesting study carried out in 2005 for the Allergy Research Foundation found that the symptoms of around 50% of general practice patients who believed that they had a ‘food allergy’ resolved when they were put on a ‘healthy eating’ diet for two weeks.) [4]

Meanwhile, as Dr Spence rightly points outs, the food industry has seen an opportunity and has moved in. But then that is what industries do; if they see a market for a product, they will supply that product, be it football shirts, top of the range sports cars or gluten-free food.

In this particular instance, the industry’s attention was originally attracted not by those who are self-prescribing a ‘freefrom’ diet but by the significant growth in diagnosed cases of coeliac disease (up from one in 300 to one in less than 100 and increasing daily) and in genuine food allergy (one in 70 children now have a peanut allergy). But there is no doubt that it is the numbers of those who are now choosing to eat ‘freefrom’ rather than those who have to do so that has fuelled the recent and dramatic growth in the industry.

On the other hand, all industries depend on their customers to buy their products and, given that ‘freefrom’ foods still remain significantly more expensive than conventional foods, they must be perceived to deliver some benefit to those who purchase them otherwise, in these straightened times, those purchasers would not continue to buy ‘freefrom’. Yet the upward trend in the purchase of ‘freefrom’ food shows no sign of slackening, nor do respected market forecasters such as Mintel, see any chance of it doing so anytime soon. [5]

So, Dr Spence, while you are condemning the food industry for peddling ‘bad medicine’ could the issue be rather different? Could it be that, far from being in the vanguard of scientific discovery and development, the medical fraternity is, yet again, trailing behind while the patient and the food industry lead the way?…

1. http://www.biomedcentral.com/1741-7015/10/13
2. http://www.bmj.com/content/345/bmj.e7907
3. http://www.clinicaltrials.gov/ct2/show/NCT01485341
4.
http://www.foodsmatter.com/allergy_intolerance/management_treatment/arti…
5. http://store.mintel.com/meat-free-and-free-from-foods-uk-september-2012

Since Dr Spence would no doubt dismiss my views as biased and ‘driven by profit’, let me declare my interest. For 20 odd years I have run totally independent magazines and websites (www.foodsmatter.com) providing information and support to those who suffer from food allergy, food intolerance and their many related health conditions. This information has included information on the foods available for those on ‘special diets’. These websites take a very small amount of advertising from industry but are in no way industry supported.

Six years ago we decided that awards might be helpful to encourage better quality, nutritional awareness and innovation in what had come to be known as the ‘freefrom’ industry. These awards (www.freefromfoodawards.co.uk) are ‘supported’ by the food industry in that we have sponsors and companies pay to enter however, all judging is entirely independent. During these six years the availability, range, quality and nutritional profile of ‘freefrom’ foods has improved enormously and we would hope that our awards have in some way contributed to this improvement.

Competing interests: I run independent informational websites supporting those with food allergy and intolerance and industry awards for ‘freefrom’ food.

Elucidating allergy/intolerance confusion….

Last week we had a meeting with the lovely Ceres PR who will be working with us on promoting the FreeFrom Food Awards this year – and one of the things they asked us to outline for them in our briefing was areas of confusion in ‘freefrom’ and allergy/intolerance.

Not a problem, I thought, a couple of quick sentences – until I actually came to think about it. At which point I realised that the whole subject was fraught with confusion, both in terms of what freefrom/allergy/intolerance actually mean – and what they are called. So, for everyone’s benefit….

• ‘FreeFrom’ - a relatively loose term applied to any product (not only food) that is ‘free of’ whatever it is that you do not want to eat/put on your skin/use on your loo etc.

Those who are intolerant of gluten think it only applies to gluten-free foods, those who have a dairy problem think it only applies to dairy-free foods, those who have multiple allergies/ intolerances think that ‘freefrom foods’ will be free of all of their allergens and get quite upset when they are not!

‘FreeFrom’ is not a ‘marque’ and has no legal or regulatory status. There is no governing or policing body for freefrom.

However, the term has been widely adopted by the food industry as a ‘cover all’ term for ‘dietary’ foods that are gluten/wheat/dairy/nut etc free. It is also now starting to be used for foods that are free of other ingredients which are perceived to be unhealthy  (such as additives) and, by extension, even for ‘ethical’ foods – fair trade, organic, low food miles, animal friendly etc.

• Allergy  / intolerance

The medical definition of food allergy is an immediate immune system reaction sparked by the binding of an IgE antibody to a mast cell thereby causing a release of histamine.

The medical definition of  food intolerance is a delayed reaction to a food which does not involve the immune system, the symptoms of which are extremely varied and can be behavioural/psychological as well as physical.

These definitions tend only to be understood by the medical profession – and not by all of them!!

The average food intolerance sufferer thinks of him/herself as a food allergy sufferer which explains the huge divergence between the ‘official figures’ for food allergy (1-2% of the population) and the popular perception (30-40% of the population). Dietitians, in particular, get very exercised about this…..

• Cow’s milk allergy and lactose intolerance

1. Cow’s milk allergy is an immune response (see allergy above) to one or more proteins in cow’s milk – can be fatal.

2. Cow’s milk intolerance is a food intolerance (see intolerance above) to some or all the constituents (not necessarily proteins) in cow’s milk.

3. Lactose intolerance is not, strictly speaking, an intolerance at all but a deficiency of the enzyme lactase which digests the lactose sugar in milk. (In lactose intolerance the undigested lactose sugar ferments in the gut giving the typical digestive symptoms of lactose intolerance.)

Lactose intolerance has nothing to do with cow’s milk allergy and although it is possible to suffer from both, they are totally separate conditions.
Very few outside the medical profession understand the differences so the three terms are used indiscriminately.

• Coeliac disease, gluten sensitivity/intolerance, wheat allergy, wheat intolerance

1. Coeliac disease is an autoimmune condition in which the protein fraction, gliadin, found in wheat, barley and rye, causes the villi or fronds which line the small intestine to atrophy thereby preventing the sufferer absorbing nutrition from what they eat and preventing its proper digestion. It can have wide ranging symptoms many of which may be digestive, but need not be. It is thought to affect around  1 in 70 of the population although it is also thought to be heavily under-diagnosed.

2. Gluten sensitivity/intolerance. This is an intolerance (see above) to the gluten which is found in all grains. It is a ‘new’ intolerance in that its existence is only just coming to be recognised; it may, in some degree or other, be very common.

3. Wheat allergy – an allergy (see above) to one or several of the proteins in  wheat.

4. Wheat intolerance – an intolerance, see above, to one or several of the constituents (not necessarily proteins) of wheat. This appears to be most common in relation to highly processed, high-gluten flours and products made from them.

All four conditions are commonly confused.

• Dairy / eggs

Eggs are not a dairy product although many people think they are – I have never been able to get my head around why they should!!
Strictly speaking dairy products only refer to cow’s milk products although the term is often taken to refer to all animal milk products (goat, sheep, camel, mare, donkey etc etc)

• Butter

Strictly speaking ‘butter’ refers only to churned animal milk but it is used in common parlance in other contexts – cacao/cocoa butter, coconut butter, shea butter, nut butters etc – which have nothing to do with cow’s or animal milk. However, the terminology causes a great deal of confusion amongst those who think they might be dairy/milk/cow’s milk intolerant.

• ‘Milk’

The term should only refer to cow’s milk or at least to animal milks. However, for convenience it is also used in general parlance (not  in ingredients lists or on food labels) for almost any drink which is white(ish) and can be used for similar purposes as cow’s milk eg. soya milk, rice milk, coconut milk, oat milk, spelt milk etc

• Nut/peanut allergies

1. Peanuts are not tree nuts but legumes – eg fruits which grow and ripen in a pod – so being peanut allergic does not mean that you will be tree nut allergic or vice versa – although some people can be allergic to both.

2. Tree nuts include  walnut, almond, hazelnut, cashew, pistachio, and Brazil nuts of which cashews, Brazils and hazelnuts are usually thought to cause the most serious allergic reactions.

3. Although coconut are treenuts they are not usually considered to have a high allergy risk.

4. Seeds – pine nuts, pumpkin seeds, sunflower seeds, sesame seeds etc. These are not nuts and, although you can be allergic to any/all of them and you can have both a nut and a seed allergy, the fact that you are allergic to nuts does not mean you will be allergic to seeds and vice versa.

Hope you are now somewhat wiser….  If not – for more information check out:

The articles on FreeFromFoodsMatter for more on ‘freefrom’
The articles on the food allergy/intolerance section of Foods Matter for more than you will ever want to know about food allergy/intolerance!
The articles in the cow’s milk allergy sections and the lactose intolerance section of FoodsMatter
Our CoeliacsMatter site for anything you want to know about coeliac disease, gluten sensitivity or wheat allergy.
The peanut/treenut section of FoodsMatter for related articles.

Questions are never too crass to be answered

What I like about Alex Gazzola’s blogs is that they always raise questions – and as a result, tempers – while, it appears lowering tolerance levels…. His latest, titled just that, Questions, questions, questions quoted a forum post from a non-allergy/intolerance sufferer asking why, if someone found that they could not eat certain foods, they did not just forget about them and change their diet rather than trying find replica ‘freefrom’ versions.

Inevitably, this prompted a rash of incandescent-with-fury, ‘how could she’ responses (not quite at fatwah level, but not far off) along with some more balanced comments. Do read the full blog – it is illuminating.

However, the initial post raised two very interesting questions as far as I was concerned so I added a lengthy comment on Alex’s blog which I am reproducing below – only because I do think that both points need to be constantly borne in mind by anyone living or working with food sensitivity, allergy or intolerance.

So, to the question – should people be encouraged to ask questions, even when the questions are, apparently, crass or insensitive?

Yes, yes and again yes! Everyone should always be encouraged to ask questions. Ideally those questions will be sensitive and thoughtful – but even when they are apparently crass, rude and totally insensitive, they should still be encouraged. How else is anyone to learn?

And don’t forget that most of the crass questions stem from ignorance. If the person concerned gets a balanced, helpful and informative answer they will often end up a great deal more knowledgeable about the subject about which they asked the question – and  deeply embarrassed at their own initial lack of sensitivity.

It is often hard for those of us who live or work with food problems (or indeed any other health problems) to remember that we are still a quite small minority and that there is no reason why the rest of the world should know about and understand our problems – any more more that we should all  appreciate the finer points of the third act of a Wagner opera. Yet, while not understanding about Wagner is unlikely to be life threatening or even damaging to anyone, not knowing or understanding about food allergies or coeliac disease could cause someone to be seriously ill or even, in the worse case scenario, to die!

So it is very important that as many people as possible get some kind of understanding of food sensitivity and if the only way that they can do that is to ask what are apparently rude and insensitive questions, they should still do so. The person being asked needs to just take a deep breath, count to ten, remember that once upon a time before they became food sensitive, they might have asked exactly the same question – and give the questioner a polite, well informed and helpful answer.

And, on the question of whether those with food intolerances should just ‘give up on’ those foods which have been banned from their diet:

This does seem harsh but there is a certain amount of sense in the suggestion. I am not entirely sure that eating gluten-free look-a-like foods makes you more likely to ‘sin’ and have a slice of gluten filled bread – but it certainly keeps your ‘old diet’ alive and well in your consciousness.

The most successful followers of allergen-free/freefrom diets are those who have taken a deep breath, looked at their whole diet (and indeed often lifestyle) and have changed it to accommodate their sensitivities. They do not look for exact substitutes for what they cannot eat, but move on to eating the sorts of foods that they can eat without any risk or danger. In due course, their tastes change and they genuinely are no longer interested in the squishy breads or creamy cakes which they used to love. As a result they do not feel deprived and they are not tempted to ‘sin’.

However…… Although this may end up by being a far more satisfactory outcome, it is very hard when you start – and it is really not for everyone. When some people are diagnosed with a food allergy or sensitivity and put on a ‘freefrom’ diet they feel genuinely bereft – food is extremely important to us all and losing your favourite foods is like losing a relative or close friend. Which is why ‘freefrom’ food, and especially freefrom food which genuinely mimics the original (a gluten-free croissant or dairy-free cream cake for example) is so important for so many people, especially when they first start on the diet.

I am delighted to say that ‘freefrom’ food is now also moving away from merely looking for identikit gluten or dairy-filled alternatives, to using naturally gluten-free or dairy-free ingredients (the quinoa Alex mentioned, teff flour, coconut milk etc) and turning them into delicious, tasty and interesting foods that will gradually lead food sensitives on to other ways of eating that will not make them ill, and that will not tempt them back into their ‘old paths’.

OK – I will now duck as the brick bats sail overhead…..