Those of you who in the last few weeks have been watching Channel 4’s excellent show The Last Leg with Adam Hills – essentially late-evening chat about the day’s Paralympics news, teamed with banter and discussion – will have been familiar with a segment of the programme tackling ‘questions you want to ask but don’t know whether you’re allowed to’ about disability, sent in via Twitter by the public to the presenters and tagged #isitok.
These questions typically concerned awkward, embarrassing, or humorous and previously unvoiced but sometimes probing enquiries about such matters as prosthetics, limb stumps and disability etiquette: those things you may wonder about but would never have the nerve or opportunity (or indeed lapse in manners) to ask. It was refreshing, funny, informative and it chipped away at barriers. The segment provided an environment where questions could be asked and discussed about a subject many of us may feel uncomfortable or unconfident broaching. (You can still catch the shows here.)
I was reminded of this when on the day the Paralympics drew to a close, a member of the Expat Woman forum in the Middle East posted a question concerning food sensitives seeking out ‘free from’ foods. You can read the full post here (read from the bottom up) but here’s the key gist of the question she posed, lightly edited for clarity:
“Why do those who have these intolerances just not embrace the fact that these foods [ie bread, pastas] are out of their diet and just forget about them rather than trying to duplicate or imitate the original? Just wondering.”
The response to this post was strong (and was stronger before some editing).
Poster Purple said she was ‘boiling inside’, called the post ‘ridiculous’ and took offence at the inferred suggestion that staple foods should be forgotten and that her child should ‘embrace’ coeliac disease – even though this was framed as a question, and further was directed at adults, not children.
Shazman called the post ‘pointless, offensive, shallow-minded’.
I don’t know the history of the board, its members, or the posts that have appeared there, but at face value I didn’t view the question as deserving of such a response. I think the OP is perhaps guilty of not treading as carefully as she might have treaded in phrasing it, and maybe of a little thoughtlessness and naivety. Common sense, it could be argued, should have told her what the first responder, BritGeek, put into words for her (edited again):
“It’s difficult to give up things you have been eating for 40 years overnight, especially if you love them! Not everyone has the willpower to go without whilst the rest of the family eats cakes. Can you imagine giving up your favourite foods and then watching your family eat it in front of you?”
But there are other reasons which are perhaps less obvious to someone unaware of the issues and which she could’ve been informed about. Convenience, for example – the freedom to take with you a handy homemade sandwich made with GF bread. Safety, too: ‘free from’ foods are made by companies who take measures to ensure they are allergen-friendly. There aren’t loads of them about relative to ordinary manufacturers, and many with allergies feel more secure consuming them, safe in the knowledge that they won’t spot a ‘may contain’ warning when they’re half-way through eating the food. You could also argue it’s important to support the ‘free from’ industry, which in turn sponsors research and charities.
‘Forget’ about ‘free from’?
So, a few reasons to seek out ‘free from’, then. But are there any arguments for moving away from it? Coincidentally, at around the same time, regular poster MSG on the Gluten Free Message Board made the following interesting point.
“I suspect one of the problems with prescription-based food and all wheat-mimics generally is they keep alive the memory of how real wheat-based foods taste, thus I think a coeliac consuming such food is, in some circumstances, more prone to “cheat”. Such people are less likely to explore alternative foods and develop a taste for them.”
This was a bit of a new idea to me. I’m not sure we can say whether these suspicions are true or not – whether consuming gluten-free bread makes you more susceptible to taking a bite out of some passing glutenous bread, or whether eating gluten-free pasta keeps you away from experimenting with quinoa – but it’s certainly an interesting idea from which, I imagine, a lot could be gained in discussing or researching.
Either way, the point was that this was not an unsayable thing for a coeliac board: it was a comment that could be absorbed into the fabric of the discussion and responded to without raised hackles.
Anyway, back to the original post. Apparently unperturbed, the OP pressed on:
“Why keep duplicating the foods that make you sick? Does this not just perpetrate the feelings of missing out on all the “good stuff”? Aren’t a lot of these alternatives really over-processed foods – and are these actually good for people who are sensitive to what they eat?”
Some posters pointed out that alternatives need not be ‘worse’ than gluten-containing foods, but others were dismissive. The OP should “educate herself on the topic of gluten free and Celiacs and other food intolerances before making such a comment” said one, and was told “you know very little about intolerance/allergies and how difficult it can be” by another.
Now, I imagine years of experiencing lack of understanding, perhaps lack of diagnosis, difficulty of eating out safely, and other problems I can’t even begin to imagine, may leave some food-hypersensitivity sufferers or their carers more sensitive to perceived criticism or sceptical questioning – which would be understandable – so part of me feels very reluctant to criticise those I’ve quoted who responded sharply to the OP.
And yet part of me still thinks: blimey, all she did was ask questions…
Education, education, education …
So where does this leave us?
I think most of us involved, either professionally or personally, in the world of food sensitivities will agree that, yes, people educating themselves about the issues is hugely desirable and beneficial. But surely the freedom to ask, say, difficult, provocative and even silly questions is an essential pre-condition to open up the availability of that education? If people are made nervous of asking possibly daft questions of those in the know, will it make them think twice before even asking sensible ones – leaving them ignorant and Googling around for the some of the nonsense that lives on the web?
For clarity’s sake: I’m all for ‘free from’ food. I like it, I write about it, I sit on the panel of the FreeFrom Food Awards and judge it, I eat it – even though I don’t need to. I know it has transformed people’s lives – but people outside of our world may not know that it has transformed people’s lives. There is ignorance about it, still: people outside our world do not always know how good it is, either – I still see people describe gluten-free bread as tasting of cardboard, proof positive they have not come across the output of Genius or Fria, say.
But this isn’t really about ‘free from’ food. It’s about learning. It’s about ‘greater education’ – among caterers, food manufacturers, shopkeepers and members of the public – that we are always arguing is lacking and needed. Well, people learn by asking questions (and, indeed, by getting things wrong). Do we not need to be free to ask, to be open to be asked, and ready to answer?
Are there questions we should never ask or be asked? The feel of the #isitok segment on The Last Leg was that there shouldn’t be. Is “Why should the NHS subsidise your sandwich and not mine?” an offensive question – or an opportunity to explain the value of gluten-free prescriptions to the health of coeliacs? Is “How long would it take for you to collapse if you accidentally ate a peanut?” an insensitive, crass question of a severely food allergic – or a chance to educate on the enormous danger of cross-contamination?
I suppose context and tone (often lost or difficult to gauge online) matters, too, and everyone will have their own line, but I’m leaning towards feeling that we need to give a sort of default benefit of the doubt. People curious enough to ask about issues of relevance to us need to be given permission to cock up so that they’re not nervous of cocking up, and not afraid to ask questions for fear of harsh responses. Many already view food sensitives as fussy eaters and those professionally involved in the sphere as guilty of indulging them – are we in danger of being seen as having chips on our shoulders too?
That thread has died down now, but it’s there, to be stumbled upon by others, who will see someone asking a question about ‘free from’ and getting a telling off. And I think that’s a bit of a shame.
I look forward to your thoughts.
As per usual a very good post Alex. I completely agree that education around food intolerances or allergies etc. is key to making a real difference in changing people's opinions and attitudes. I also agree that people should be able to ask open questions in forums without the risk of being 'pounced on' by those with knowledge of the subject. If I'd been asked a similar question by someone in the office, I certainly wouldn't have taken the 'perceived' tone that some of those respondants in the forum took. I wonder if that's part of the problem? There's an air of anonymity which allows people to react without consideration of other people.
I do think the comparison to the channel 4 show isn't quite right. The aim of that feature was for people to ask those types of questions. I don't know the site or the people who usually respond but I'm sure if the aim of the thread had been 'ask anything you want on coeliac disease' then there wouldn't have been the same reaction. I aren't aiming to justify their reactions and completely agree that the best way of people learning is by asking questions.
There was another reason I chose to use the Paralympic programme device to introduce my theme, which concerned a comment on the thread in question which was later edited out, but I chose to keep it in as my mind genuinely had forged a connection between the two at that point, and it seemed reasonable to explore it.
I was aiming for an analogy not a comparison, though granted it’s not perfect by any stretch: I just felt there was some relevance in how the clear freedom to ask questions on the show produced a lot of really good things – educational answers, confidence, information, clarification, humour and, most importantly, the breaking down of barriers – and that were we to try to instill more of that sense of ‘anything goes’, and avoid situations and scenarios which undermine it, it could have the same beneficial effects to awareness of food sensitivity issues, where it’s so clearly needed.
Great comment – thanks!
Another good well thought out post – and I would entirely agree, asking questions, whatever the question, leads to an opportunity to explain and educate and ultimately this education will permeate through society and make eating out and providing an allergen free diet easier. Surely this would be an ideal goal to aim for? I encourage people who see me in clinic to be educators about the requirements of various diets, even if it's just directing the person with the question to a website (patient support groups only.) This is a good way to help if the question has raised heckles – which can occur, depending on the persons individual experiences with their dietary changes. If an aggressive response is the result of asking a question then people will stop asking and as you suggest in your post this promotes further ignorance about the issues and ultimately benefits nobody.
Really interested to hear that you encourage your patients to be educators too. Do you think some people with food sensitivities need to be prompted to do this – and do you think some may lack confidence to do so?
Online we see many people with coeliac and allergies advising one another and sharing information and tips, but I just wonder whether it's the same with those who are less active on social media – the ordinary man or woman in the street with dietary restrictions, who is perhaps older and doesn't use the internet. It's too easy to form opinions based on what you see online, so I guess I'm curious about your broader clinical viewpoint.
Thanks for comment!
I do think sometimes it takes more than a little confidence to start – this was my experience when I was at the Allergy & Free From Show and eating out during Coeliac Awareness Week. But I don't have to do it regularly. I can't really comment for others but I think generally the longer you live with an allergy or intolerance the more confident you would become – but perhaps we should ask people who have to live with this on a daily basis? Any comments?
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 not only a great deal more knowledgeable about the subject about which they asked the question, but 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 problem) 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 than that we should 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 go and 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.
On the question of whether those with food intolerances should just 'give up on' those foods which have been banned from their diet – it 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 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 even thinking about it. 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/sensitivity or coeliac disease 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 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 new and exciting naturally gluten-free or dairy-free ingredients (the quinoa Alex mentioned, teff flour, coconut milk etc). They are turning these ingredients into delicious, tasty and interesting foods which 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'.
Thanks for such an in-depth response, Michelle.
It is very interesting that in your experience those who have overhauled their diets are the most successful followers of allergy-free lifestyle – I presume you mean successful in terms of health benefits and positive psychological outcome? – but I agree that free-from food plays a vital role to many people, including, actually, as a 'stepping stone' towards a different diet, in the immediate months after diagnosis, but often longer-term too.
As an 'old dog' who's having to learn new tricks all this is relatively new to me and I'm only beginning to think about re-inventing my diet rather than simply eating the same old stuff with free-froms substuting for old favourites. I really relate to the comment “I suspect one of the problems with prescription-based food and all wheat-mimics generally is they keep alive the memory of how real wheat-based foods taste." GF bread, pizza bases etc are a poor substitute and only make me want the real thing more. It has only recently occured to me that life might be better if I gave up on bread altogether – and learned to love the rice cake.
Fancy seeing you here… Thanks for a very interesting comment. I'm torn between urging you to experiment with corn bread, teff flour, quinoa and the rest, and steering you towards some of the terrific GF breads that are available these days. (Fria especially is very good.)
I imagine there's no easy route to a solution, and you will find your own way with experimentation. Either way, both options lead to roads with destinations much more tasty than the rice cake, I promise!