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.

Sunday, 7 June 2015

Was there sense about allergy from Sense About Science?

I'm a fan of science. I've little patience with those who consider science an optional means of understanding the world (in my experience, exclusively people who've never studied it), and I believe evidence-based medicine - which uses rigorous scientific method - is the best means of approaching truth.

Tuesday, 2 June 2015

Celery allergy

I know from Analytics that people come to this blog having searched for celery allergy, but I've never properly written about it before, having only mentioned it in passing. The time has come.

Celery is one of the 'big 14' food allergens, which must always be labelled in the EU, and likewise celeriac - the root of a celery-like plant.