Tuesday, 18 August 2015

Daily Mail, NHS and Gluten-Free Prescriptions: the same old story

"Doughnuts and Pizzas on the NHS" - the latest attack on the NHS from the Mail. The story originally claimed £116m of gluten-free junk food was being made available on prescription, as the cover page below shows, but this has later been changed, as you can see from the web version, to '£116m of food for special diets including junk food'.

I expect we have Coeliac UK's strident response to thank for that correction. They pointed out that in fact only £27m was spent annually on gluten-free prescriptions, most of it on staples.

From what I can tell, that figure has been drawn from the total of the eight gluten-free food categories given in this document from the HSCIC published last month, by adding the eight numbers in the fifth column (see Section 8, Table 9.4). You'll note that the junk food spend (biscuits) was £1.3m.

The coeliac community were rightly pissed off. Coeliac UK's Sarah Sleet was interviewed throughout the day on various radio stations. The Independent journalist Siobhan Norton gave a good response. Blogger Kevin Gollop found the funny side.

Despite the events of yesterday, the Mail has continued with its attacks by today publishing a piece which I consider to be a lot worse, because it's by a doctor - Dr Max Pemberton. You can read it here.

In the third paragraph he claims: "... the number of people claiming to be intolerant to foods - especially gluten ... - is rising at an astonishing rate and, with it, the cost of providing 'free-from' foods on prescription"

To imply such a causal link is reckless and careless. Gluten-free food should not be prescribed to the self-diagnosed. Prescription food is not routinely available to those properly diagnosed with other food hypersensitivities, let alone those who have self-diagnosed or taken an IgG test.

Elsewhere, he recycles tired old figures; he perpetuates the myth that diabetics necessarily need special foods (he's a doctor, remember); he attacks people who think they are ill, because that's what the Mail does, repeatedly, as I have blogged before. Some of these patients may well have psychologically-mediated issues with food - and you'd expect a mental health specialist, as he is, to have more sympathy with them.

We have been here before with Dr Max Pemberton, of course. Click here for my thoughts on a very similar article he published five years ago (whole stretches of text are identical), in which he criticised the attention-seeking 'mass delusion' of people who believe themselves to be unwell, and dismissed a friend with lactose intolerance for avoiding milk, but eating chocolate biscuits, a story he churns out again in today's Mail piece.

The Mail may quietly correct, and they may even issue a more formal correction - as they did previously on the prescription story they ran in 2011 which claimed that a loaf of bread cost the NHS £32, which you can still read here (although the original story itself is no longer online) - but I doubt they will ever apologise for the damage they have caused the coeliac community, or the resources Coeliac UK have had to spend on defending their position.

As I wrote in yesterday's blog, gluten-free diets and foods are on average nutritionally inferior to gluten-containing diets. Some coeliacs - especially vulnerable ones in remote areas or with limited accessibility - need the support prescriptions provide. We have to keep defending this while it's needed.

Sunday, 16 August 2015

The Gluten Free Diet: for better or for worse?

I'm still processing last month's anti-gluten Twitter campaign from ex-Dragon Duncan Bannatyne - a man who, remember, warned hundreds of thousands of followers against accepting nutritional advice from dietitians trained to give it, and in the same unqualified breath dished it out himself. Failing to see the irony - perhaps due to a surprisingly mediocre intellectual capacity which revealed itself along with an almost comic unpleasantness - he refused attempts to be reasoned with, as countless coeliacs and nutrition experts learned. The futility of trying to make him see sense eventually dawned: we were challenging someone to a battle of wits - but who turned out to be unarmed.

In the discussions which followed, the question of whether the gluten free diet (GFD) was better or worse than the gluten-containing diet (GCD) cropped up a fair bit. This is a vexed issue, because no two people's diets are identical, and although we all need the same nutrients to stay alive, different individuals need different levels, depending on size, age, sex, health profile, etc.

GFD vs GCD - which wins? 
I fell into an exchange with someone who argued, because he'd been following a GFD for years, with no ill effects, that the diet was not nutritionally poorer. This was a flawed argument, because it was a conclusion drawn from the experience of just one person - himself. I'm always surprised when people fail to grasp they don't get to decide on the truth or falsehood of a medical matter, any more than their vote gets to determine the outcome of an election. I may as well argue that because I didn't vote Conservative in May, Cameron didn't win. You see this failure of logic regularly in discussions about food intolerance tests: 'I took a test and it worked for me therefore these tests work'. Wrong.

It's the big picture we need to explore - lots of people. And we need measurements. An election is easy: everyone gets one vote. But nutrition is complicated. What to measure?

There are two things:
1/ The nutrient content in GF foods versus comparable GC foods;
2/ The nutritional intake of GFD followers versus GCD followers.

Let's look at the first of these.

This study in a Canadian Journal of 130 GF and GC foods concluded that packaged GF foods were higher in fat and carbohydrates, and lower in protein, iron and the B vitamin folate, which a study by nutritionist Tricia Thompson also foundThis study found that GF breads were higher in fat, lower in protein, and higher in glycaemic index values than GC breads.
GF foods: on average, higher in fat and sugar

Let's look at the second.

This study found half of those on a GFD for 10 years had a poor vitamin status. This one, on children, found GF kids had higher carb intake and lower folate. 'Dietary inadequacies are common' reported this UK study (which recommended fortification of GF foods). This German research found that coeliacs on the GFD had lower than national average intakes of B vitamins, iron and magnesium. 'Following a diet based on GF foodstuffs could suppose a nutritional imbalance in celiac patients as well as non-celiacs who follow a diet that includes many GF rendered foodstuffs' - was the conclusion of this Spanish research, and this one found that trace mineral intake was worryingly low in men and women on the GFD. The GFD may even negatively impact the microbiome and your immunity.

There are more out there.

So what do such studies mean? 
Here's what they don't mean.

They don't mean that your GFD is necessarily bad, or that your best friend's GCD necessarily good. They don't mean my GCD is better, the same or worse than your GFD or your neighbour's GFD. They don't mean that a nutritionally adequate or even excellent GFD is impossible.

They do mean that, given our particular food culture, and typical diets, and available products on our shelves, and lifestyles, the average GFD is less likely to be nutritionally complete, more likely to have unhealthy quantities of sugars and fats, less healthy overall, and tougher to follow, than a GCD.

These are the consistent findings of many Western studies, of the many researchers and scientists who have conducted them, and on which experts such as dietitians' opinions are based.

They get to decide - not you nor I - and until Western diets alter drastically and the nutritional profiles of the free-from foods on our shelves improve via fortification or otherwise, this is the way it will remain.

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Friday, 24 July 2015

Dragon's Din

I've said it before but to repeat: I have no issue with people following the diet they choose, but I do with those who urge others to follow suit, without recourse to medical or dietetic advice, and on the basis of false logic.

"It worked for me therefore it will work for you" is an example of such logic, one Novak Djokovic has apparently failed to see the flaw in. And today another expression of it came from entrepreneur Duncan Bannatyne, in a sequence of tweets, encouraging his several hundred thousand followers to alter their diet and 'go gluten free for a better life', as gluten was 'becoming a health risk'.

I objected, pointing out that was not good advice, not supported by dieticians, and asked him to reconsider his statement. This was batted away: he made the baffling claim that gluten-free "is not a diet". Further attempts at reasoning didn't work; other voices objected but were rejected too. He was rude to several. I was told I talked "terrible rubbish that allows many people to suffer the effects of too much gluten". Read more here, if you care; you'll find other ill-informed noise on his stream, which he continued to tweet, despite the concerns raised. The sorry saga culminated in today's key accomplishment:

Why is he so deluded? I can only suppose from his stream it's because he had a transformative experience on the gluten-free diet (good for him), has come to regard gluten as evil, and believes it needs to be banished from everybody's diet. This is a depressingly common arrogance: a failure to appreciate that one's own body is not the same as everyone else's body, and an insult to the medics and dieticians who are the only ones qualified to adjudicate on the truth or falsehood of medical issues.

Gluten is known to be evil only to those with gluten-related disorders, as peanut is evil to those with peanut allergies. I've written extensively before about why casually giving up gluten is not advised, so will only remind readers that, if you have undiagnosed coeliac disease, it is important to keep gluten in your diet until the diagnostic procedures are fully completed, and that if you switch to an elective gluten-free diet, the best advice is do it with the support of a trained dietitian, who understands that a GFD can be difficult to follow and may leave you vulnerable to nutritional deficiencies, if you don't know what you are doing. It's not to be taken lightly.

Someone needs to advise Bannatyne about all this, before he continues to misinform those who follow him. I've asked some health bodies to act on what he wrote today, and hope some people continue to politely point out the folly of his advice, should he dish it out again. I no longer can.

Sunday, 19 July 2015

The new gluten pill: why so hard to swallow?

Canadian researchers at the University of Alberta have developed a supplement from hen's eggs which may help people with coeliac disease consume gluten.

The details are a little unclear to me, but according to Professor Hoon Sunwoo, who co-developed the supplement, it will bind with gluten in the stomach and "help to neutralise it, therefore providing defence to the small intestine, limiting the damage gliadin causes" (gliadin being the key gluten protein responsible for most of the coeliac reaction). (Readers less alarmed about the complex science behind it than me might learn more from the recently published paper on the background research.)

The coverage of this story has been mixed. Popular Science's headline seemed to assume all coeliacs relentlessly fantasised about eating gluten and that gluten-free pizzas and beers weren't available to them. Meanwhile, a piece in Munchies exaggeratedly trumpeted the 'miracle' arrival of the pill, which will prevent any coeliac turning into a 'whimpering fart factory' - because wind production is the key major concern, after all, and not villous atrophy, osteoporosis or other life-damaging complications.

Gluten egg-sterminators?
Reaction from the coeliac community has been mixed too. Although there is some understandable scepticism and uncertainty, this could one day turn out to be a feasible treatment - if not allowing the consumption of small quantities of gluten, then as a useful insurance protection against the risks of potential cross-contamination when eating out - but I can't understand those who have reacted angrily to the news. It's not difficult on social media to find insults flung at the scientists, including the accusation that they're motivated by greed. Since when has profiting from your expertise, research and work been a crime, anyway?

This is what I find the most difficult to accept: the apparent view of some coeliacs - mainly in the US, as exemplified by this GlutenDude blog, and comments, from last year - that such science is unwanted and almost should not take place at all; that we should focus on improved awareness, eating out and food options instead. I have no issue with those who don't wish to take pills or vaccines or other in-the-pipeline medical treatments for coeliac disease; but I do with those who assume no other coeliac would want to either and call for their own preferences to be exclusively met. Why can't we have all - better and safer food options and better awareness AND medical treatments as well? One does not need to come with the sacrifice of the other, after all ...

All this will take time. Efficacy trials are needed. Three years has been mentioned as an overall timeframe. But it could be longer. We have been talking about gluten pills for almost a decade. I wrote this article for Coeliacs Matter in 2008, and seven years on the therapies aren't yet available.

When I recently updated the 'Future Treatments' section in the revised edition of my book on coeliac disease, I was excited by the number of new ones I discovered and could add to the chapter. And here is yet another one. We should be hopeful, but cautious, about them all - and supportive of the brilliant brains behind them.

Wednesday, 15 July 2015

Coeliac and food allergy: is there an association?

I was at a talk many years ago - possibly at Gastro 2009 - where the speaker mentioned in passing that there appeared to be a slightly increased risk of coeliac disease in those with food allergy, and possibly vice versa - of food allergy in those with coeliac disease. The figures she provided seemed so statistically insignificant, and she breezed over it so quickly, that I didn't recall giving it much further thought at the time - or indeed since.

But this research, published online today, from the University of Trieste in Italy, shows that "sufferers from severe food allergy seem to be at a five-fold increased risk of celiac disease" - in other words, a roughly 5% risk.

Although the numbers assessed were relatively small, if confirmed in future studies, perhaps this should not surprise us. Although coeliac disease is not an allergy, as an autoimmune disease it still involves the immune system, as does food allergy. Could having one form of immune-mediated condition increase your risks of another?

There are many other questions to arise from this. Many coeliacs remain symptomatic after months, even years, on the gluten-free diet. Could an undiagnosed food allergy be responsible for a sub-section of this group's ongoing ill health? It's possible, but I imagine more probable in the case of non-IgE food allergy, where symptoms are more likely to be gut-related, rather than severe IgE-mediated food allergy, which is characterised by urticaria, itching, wheezing and other more dramatic oral, circulatory and respiratory symptoms - and which is what the Italian research looked at.

What about other severe allergies? Severe latex allergy, or pollen allergy, or pet allergies; or those with allergic asthma or eczema? Could individuals in these groups have increased risks too?

And what about screening? As the researchers themselves said: "Our findings suggest routine screening for CD should be recommended in patients with severe food allergy." If indeed the prevalence is 5% in this group, this would roughly tally with the prevalence of coeliac disease in patients with autoimmune thyroid conditions and type 1 diabetes, both groups of which NICE guidelines indicate should be screened for coeliac.

To me, this also highlights once again the importance of obtaining a proper diagnosis for your health issues - and not resorting to self diagnosis and all its potential problems, nor to unverified forms of testing, nor attempting experimental diets, in which we are increasingly encouraged to participate by the likes of personal trainers and unqualified celebrities.

Get it right, and you know exactly what you are fighting; get it right, and you'll eventually know what associated risks you might have with your condition - as we increasingly learn more about them. This is not a time to be speculating, guessing or listening to the unqualified - no matter how nice and sincere they seem ...

Do you have both severe food allergies and coeliac disease? Have you been diagnosed with one, and tested for the other? 

Sunday, 12 July 2015

Subway tales and takeaway stories

There is no obligation for any food service outlet to provide for any specialist diet, and those with allergies and intolerances don't have a right to be catered for by any business.

But you'd think by now, with the gluten-free 'trend' well established, the growth in food hypersensitivities well known, vegetarianism and veganism both holding their own, and the paleo movement in the ascendance, that all major outlets would be trying to provide at least an offering or two to those whose approach to food is something more sophisticated than "I'll eat anything, me".

Take a major outlet such as Subway, for instance. In my social media streams and searches I regularly spot their customers - and post-diagnosis ex-customers - asking them when they're going to introduce gluten-free options. They have a stock response to this.

They've had this stock response since 2014 ...

Hold on, they've had it since 2013 ...

And yes, there's a 2012 response in the vaults too, which tells us that for coming up to three years at least, Subway's supposedly constant search for improvement has failed to throw up a GF option under the mattress. Perhaps they should check down the back of the sofa.

But while 'free from' offerings may be optional, declaring which of the 14 key allergens are present in your offerings is certainly obligatory ...

Excellent work by the Royal Society for Public Health last week revealed a shocking picture of non-compliance with the EU FIC regulations at London takeaways. Some selected lowlights: 54% of outlets investigated didn't know whether a major allergen was in a meal; 70% failed to signpost how allergen information could be obtained by consumers; 100% of fried chicken outlets had no written records of allergens used in meals. This news made ITV London last week, and you can read more on it at Michelle's blog.

On the back of this, someone on Twitter suggested we all stay away from takeaway outlets. I disagree. We should instead make a point of approaching them and checking up on their allergy law compliance, even if we don't want to order their food. Because it appears that nobody else is doing that, and enforcement seems to be lacking. And if they're breaking the law, we should politely point it out.

Because while Subway are free to carry on copy-pasting hollow lip service to their potential customers on social media about possible in-the-pipeline free-from offerings which never seem to materialise, all food service outlets without exception need to get with the programme when it comes to EU FIC laws. I'm pleased to say Subway are complying; but dozens of others clearly aren't. They need to sort it - should we not tell them to?

Monday, 29 June 2015

Gluten or no gluten: an ingredients dilemma

The Food and Drink Federation (FDF) - the 'voice of the food and drink industry' - have published a new guide today called Gluten Labelling Best Practice. It is in partnership with Coeliac UK, among others.

I'm not sure why this has appeared now, six months following the introduction of EU regulation 1169/2011 in December. The press release accompanying the launch says its aim is to 'support food manufacturers on the labelling of food products containing gluten', but I can speculate that it is required because a number of those manufacturers have been getting it wrong. This isn't surprising, because allergen labelling is complicated; indeed, the release talks of illustrating some examples of 'the more challenging labelling situations of gluten-containing foods'.

One of the contentious issues covered concerns the appearance of the word 'gluten' in the list of ingredients. As we know from the regulations, it is the name of the gluten grain which should be listed and highlighted when either wheat, rye, barley or oats or their derivatives are ingredients in the product. Should 'gluten' appear alongside these? It can, but in their guide the FDF advise that it shouldn't.

"... best practice is not to include the word gluten in parentheses but to solely emphasise the name of the cereal in the ingredients list. The consistent application of this particular best practice is to be recommended, as this would ensure consumer understanding by encouraging the reading of the ingredients list for the presence of the specific gluten-containing cereal. This in turn reduces the risk to individuals looking for the word “gluten”, which may not be listed."

In at least one respect, this does make sense. There is no argument for naming the allergenic protein fractions in other food allergens - such as "milk (casein)" or "egg (ovoalbumin)" - on food ingredient lists, and so for consistency, it seems logical to do likewise with respect to gluten grains. 

But as has been pointed out to me by a number of coeliacs, while coeliacs themselves will know that barley and rye contain gluten - relatives of coeliacs may not. 'Gluten' is the alarm word for such shoppers to look out for, and in its absence, mistakes might more easily be made. 

That it is essentially optional is not ideal, as it discourages the consistency which the FDF clearly find desirable. I'd like to see a decision made at EU level on whether gluten should or shouldn't appear, and be absorbed into labelling law.

That said, I can see some difficulties with including 'gluten', as (I imagine) most coeliacs would prefer. 

Take the ingredient 'barley malt flavouring', in a jar of chutney. Barley malt flavouring contains a small amount of gluten, but if no other gluten-containing ingredient is present in the chutney, the product may well be able to make an overall 'gluten free' claim. So should the ingredient appear as 'barley malt flavouring (gluten)' or 'barley malt flavouring', in this case? The first would surely confuse both coeliacs and their relatives, if appearing on a gluten free product, and yet that would be correct, under a system where gluten-containing ingredients are labelled with the word gluten. This sort of scenario would have to be covered in any legislation - perhaps with exceptions made, further complicating an already complicated area of law - and perhaps that is why the issue has not been tackled.

I'm only 60:40, but on balance, because of it, I do feel that the FDF best practice advice is probably better. Coeliacs need to look for wheat, barley, rye and oats, like nut allergics need to look for almond, walnut, cashew and the rest - and 'train' loved ones to do likewise. If it's any consolation, I suspect many manufacturers will continue to add 'gluten', and if you feel strongly about it, it's perhaps worth telling them you're happy for them to continue to do so. 

Thursday, 11 June 2015

Total Recall: Part 2

I was at a talk last year where the speaker, a small producer of gluten-free products, explained that the only testing they did on their products was via bought allergen-detection kits. In other words, they never sent their products for analytical testing at a laboratory. The speaker insisted that there was no need, as they operated gluten-free premises, and that gluten simply could not get in.

Gluten can quite often get in. Any allergen can 'get in'. Gluten is quite often there, all right - albeit at very minute levels. There are no guarantees in life. Nothing can be 100% full proof. I later learned from a technician at a laboratory that such testing kits are unreliable*, and it made me wonder about the 'gluten free-ness' of the brands' products - and those of other small brands who might cost-cut with cheaper tests, or who don't send samples to labs quite as often as the bigger brands must surely do.