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Confessions of a (voluntary) coeliac

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Food allergies have been my professional focus for many years now, although I’m fortunate not to suffer myself. And while we do a lot of research to help understand what it’s like to have a food allergy, there’s nothing better than firsthand experience. So with the launch of coeliac awareness week last week, a few of us in the office thought it would be a good idea to get involved and go gluten-free. Here are a some of our findings:

Labelling
Without exception we concluded that clear food labelling is essential. I’m sure you’ve all raised your eyebrows when you’ve read the back of a packet of mixed nuts and seen the warning ‘CONTAINS NUTS’. Ok it’s stating the obvious, but without compulsory labelling buying pre-packed foods would be almost impossible for people with food allergies.

As soon as you start checking the labels you realise foods contain lots of ingredients you might not expect to find – I even found that my milk chocolate bar ‘may contain gluten’ – a real risk or not? How can I tell? With the time of her supermarket shop increasing dramatically, Sarah found herself naturally gravitating towards foods with clear allergen labelling boxes to speed things up. I agree clear labelling is a must.

Eating in
Generally we felt that eating at home and cooking from scratch was easy and didn’t mean a huge deviation from our normal lives and normal diets, but Ann found ‘advice about rye and oats to be confusing and conflicting’ and as a ‘reluctant potato eater’ her diet of rice, rice and more rice got tedious. We all gave the gluten-free breads and biscuits a go, and were impressed by the taste, but not very impressed by the price – not something we’d choose regularly.

Another stumbling block was hunger, if we were eating a gluten-free diet permanently I’m sure we’d get more inventive with our food choices, but during the week we generally relied on fruit for breakfast and salads for lunch – not enough to keep hunger at bay in the afternoon. Ann admits to raiding Terrence’s chocolate supplies (I don’t think he knows that yet) and Jo found herself hunting for snacks in the vending machine. Without being able to read the labels it was a game of roulette.

Eating out
It’s the situations where there was no food labelling that were the biggest challenge for all of us – especially when eating out. We know from reading food labels that there is a lot of flour added to foods to thicken them up, so although you can choose the option without bread, pasta or pastry it’s impossible to know what might be lurking – unless you ask. We all had slightly different approaches, but none of us was comfortable with ‘making a fuss’.

Jo and Ann just kept their fingers crossed that there were no hidden surprises, but this would not be an option if you had a food allergy. Sarah was more dedicated, but found that there weren’t any gluten free options on the menu so, she sat empty plated while her friends enjoyed their meal and then fixed herself something she knew was gluten-free when she got home. I tried to do the right thing and put in an order for a gluten-free lunch option at a meeting I attended, but when this didn’t arrive I was left nibbling on fruit while everyone else tucked into their sandwiches.

It’s been a useful experiment and I’m pleased with what the Agency has achieved on food labelling rules in Europe. Although it might seem like an added pressure on businesses, it is a life saver for people with food allergies. The other big realisation for us was the challenge of eating out. We have made a commitment in our Strategic Plan to ‘increase the provision of information about allergens, including in catering establishments’ and our newly published factsheet on gluten-free labelling is one step forward.

If you have an allergy it would be interesting to hear your experiences. If you don’t, why don’t you try going gluten-free for a week and see what it’s like.

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I'm really interested in Ann's experience of finding oat- and (especially) rye-related information confusing. There has always been some uncertainty and reservations concerning oats, but the rye issue is clearcut - it is gluten-containing. Do you have any particular examples of poor communication or labelling with respect to rye?

Alex Gazzola
http://foodallergyandintolerance.blogspot.com

Posted by Alex Gazzola on May 26, 2011 at 07:14 PM BST #

Well done Sue, how about being (voluntary) nut allergic for a few days? Tony Hines, Chairman the Anaphylaxis Campaign

Posted by Tony Hines on May 26, 2011 at 10:34 PM BST #

Dear Sue and the Team,

Thank you for taking part in the Gluten-free Challenge for our Awareness Week. As an exercise in gaining a better understanding of living a gluten-free lifestyle, I’m glad you found it useful and we’re really pleased you got involved. Awareness Week has raised the profile of coeliac disease and that the gluten-free diet is not a faddy one, but we need to go further to get the industry to speed up improvements in catering for people with the condition.

Thank you for your support,

Sarah Sleet, Chief Executive, Coeliac UK

Posted by Sarah Sleet on May 27, 2011 at 11:15 AM BST #

Sounds like you had an interesting week - bet you are glad to be able to eat "normally" again!! I have coeliac disease and have experienced similar problems when eating out, although I have never had empty plate syndrome in a restaurant. They can usually drum up something, but it usually turns out to be salad, baked potato ...zzz.......!!! I also find that although they may not use flour to thicken soups, they may use stock cubes which contain gluten.

There are fairly good ranges of GF cereals in supermarkets, but they are quite expensive, as is the bread. Coeliacs can get basic food items on prescription i.e. bread, pasta etc.

As far as the gluten containing chocolate is concerned - Coeliac UK has a list of products which are Gluten Free. I know the chocolate list like a best friend!. I have never had a problem after eating chocolate which is labelled as possibly containing gluten, but obviously I can't speak for other coeliacs.

Posted by Tracey Wright on May 31, 2011 at 09:50 AM BST #

Thanks for all your comments.

I agree that there is a lot of confusion and misinformation about the types of cereals that contain gluten, which is why Ann struggled to clearly understand which foods were OK for her to eat. Hopefully if she was really coeliac she would have been give clear dietary advice about which foods to avoid after diagnosis. Many people understand that wheat and barley contain gluten but rye is less well known. In addition there is confusion about foods such as spelt, semolina and couscous. Often people do not realise that these are types of wheat and therefore contain gluten. We have tried to address this problem and as a result of the allergen labelling legislation manufacturers of pre-packed foods are required to clearly declare the cereal containing gluten in the ingredient list e.g. wheat semolina rather than just semolina or wheat couscous rather than couscous. This should help coeliacs to more easily identify the foods which are not suitable for them.

The oats issue is a little more confusing. Oats do not naturally contain gluten, however they are often contaminated with cereals containing gluten during growing, harvesting, transport and food manufacturing. Evidence now suggests that pure oats can be tolerated by the majority of coeliacs, however it is recognised that around 5-10% of those with coeliac disease are also intolerant to oats themselves.

Tony, thanks for your message, we all really enjoyed our ‘gluten-free challenge’ and learnt a lot. I think it would be invaluable to try this for other allergens and would certainly take up the ‘nut free challenge’ for a week.

Posted by Sue Hattersley on June 02, 2011 at 12:05 PM BST #

I have been fortunate in my surgery as they have allowed my a good list of breads and pastas and a pizza base. I make my own muesli using 6 cups pure oats and a variety of chopped fruits and nuts with a little brown sugar. this is stirred together with a cupful of sunflower oil which has been heated together with some brown sugar, This lasts for weeks. Eating out is a nuisance but not impossible - most chips are OK as are potatoes and rice - meat, fish, veg - no problem. Just omit the sauces and gravies. Sandwiches are out, unless you make your own rolls using a Juvela bread mix. I have learnt to read all the small print. Try soda bread, it is surprisingly nice. When I feel depressed is when dining with friends it seems an imposition. They try so hard! Days out are tricky too. Boring to carry food everywhere.

Posted by Margaret Bossom on July 02, 2011 at 03:15 PM BST #

@Margaret B - July 02. For eating out most chips are actually not ok, as most places share the oil with other products which often have batter. You should ask if the oil is shared and if so, stick to mash or see if they will do you some chips in fresh oil - some decent restaurants/hotels will do this and you get much nicer chips too :-)

I've just reached 3 months of strict gluten free though I am not a coeliac - both my young daughters have coeliac disease and this exercise has been really helpful in understanding what they are going through and the problems they will have to face once they get choice in what they are eating.

The easiest approach with restaurants is to speak to them in advance, but either way to make sure it is the chef who is advising you, not the waiter. Sometimes it can be quite suprising what does have gluten - things you would have thought would be fine, because they have added something to change the taste. We find Indian is easiest when it comes to foreign dishes, as they seem to rarely use wheat flour in our experience anyway.

The things that catch you out are things like drinks... some restaurants have gluten free lists (though recent legislation has messed this up as now most won't confirm something is gluten free) but often don't include drinks on that. My daughter had a hot chocolate and was then in agony and 6 months later the restaurant chain finally confirmed that yes it was full of gluten. Milkshakes also may be thickened like this.

As far as chocolate is concerned, you just have to check with the manufacturer ... some are really helpful and some aren't. Look for nutrition or allergy info. e.g. Cadbury's say that some of their stuff is okay, but then smaller versions of the same bars are not because they are made in a different factory.

Posted by Another voluntary coeliac on September 12, 2011 at 11:30 AM BST #

Well done for trying the Gluten Free way of life, Now try the Coeliac diet (for those coeliacs who are supersensitive) avoid everything that is made from a gluten source including the gluten free diet, alcohols, glucose-syrup, maltodextrins, bread and rolls are out, sweets are out.
Because of our condition we have to read every label, learn what is derived from a gluten source, what is declared safe for coeliacs needs scrutiny by us. Its not safe to even eat at a coeliacs house.
Some of us are affected by airbourne contaminants as well as cross contamination it is through trying out different foods that we either react or we do not because the origin is not supplied.
Give this a trial.

Posted by Stephen A Frost on September 16, 2011 at 03:17 PM BST #

It is good to see people taking on the gluten free challenge and experiencing the issues we coeliacs have to cope with on a daily basis.

Snacks and grabbing something whilst you are out can be a problem, although increasingly restaurants and pubs are becoming better at catering for coeliacs.

As the credit crunch affects us all, it has become more difficult with rising food costs, it is a nightmare for people out of work to afford gluten free items in the supermarket (they are rarely in the reduced section!) and the company I used to work for, decided to stop ordering a special gluten free meal for me (when they had staff dos or board meetings), due to the extra cost and finding caterers who could provide something.

There needs better promotion and maybe include an element of catering for food intolerances in TV cooking competitions for example (it amazes me that programmes like the Great British Menu can provide a banquet for 200 people, yet not have to worry about any food intolerences or even vegetarians!).

Posted by Rich Mellor on October 06, 2011 at 11:30 AM BST #

I'm not coeliac either, but have just spent a month doing the Whole30 challenge (no wheat, grains, dairy, sugar or processed food)
Before doing it, I had no idea that wheat affected me quite so much. Since giving up grains, I no longer have awful blood sugar crashes, don't get bloated and don't doze off at my desk by 2pm.....
As for what I eat - meat, fish, cheese, nuts, fruit and veg. I've found, through experimentation that coconut flour can make quite acceptable cakes and biscuits, if you absolutely have to have something sweet.
I've just finished reading What Belly by Dr William Davis and I don't think I can stomach another sandwich!!!
One thing that did surprise me though.....I went to buy some cream cheese from Tesco the other day, and the label said 'Contains wheat, gluten'....in cheese!!!! Needless to say, I bought the slightly more expensive version.....

Posted by Bex on October 10, 2011 at 08:46 AM BST #

Thanks for all your comments. The subject has clearly struck a chord and I’m sorry I can’t reply to each of you individually.

Many of your comments were about the problems you face trying to buy gluten-free food products or avoiding gluten when eating out. New legislation comes into effect in January 2012, and the claim ‘gluten free’ will be legally defined. The strict limits imposed (no more than 20 parts per million) means that for the majority of consumers, foods that claim to be ‘gluten free’ will be safe for them.

Unfortunately, it isn’t possible to control gluten ingredients in a kitchen in the same way as in a factory. Some caterers will not be able to meet these strict new limits, and so won’t be able to offer options described as ‘gluten free’.

We’ve produced a factsheet for caterers to explain what they can and cannot say about gluten. food.gov.uk/multimedia/pdfs/publication/gluten0511.pdf

A number of highly refined ingredients, such as glucose syrup, are made from gluten-containing cereals but have very low residual levels of gluten remaining – under 20 parts per million – after processing. These ingredients have been determined to be safe for the vast majority of coeliacs, and allergen labelling rules don’t require these ingredients to declare that they are made from a gluten-containing cereal such as wheat.

However, some gluten-intolerant people are extremely sensitive. Even the tiny amounts permitted in these ingredients or in foods described as ‘gluten free’ will cause problems for them. They'll need to avoid all processed foods.

We advise anyone who is extremely sensitive to gluten to talk to their health professionals, so that they can get detailed dietary advice and support.

Posted by Sue Hattersley on October 28, 2011 at 11:02 AM BST #

As the mother of a coeliac son I can say from experience that there has been considerable improvement in the variety, availability and labelling of gluten free food over the last 25 years. However, other countries seem light years ahead of the UK. Having just returned from a holiday in Australia and New Zealand I was amazed to see that even the tiniest cafes in the middle of nowhere clearly advertise their gluten free options icluding meat pies, cakes etc. A coeliac in OZ or NZ would never go hungry. Come on UK caterers - if cafes in the middle of the outback can ensure provision of gluten free food how come restaurants in the middle of London can't do the same as a matter of course. There are so many people who are coeliac or allergic to wheat that it can't be too uneconomic to make provision for them.

Posted by Beryl Morgan on November 24, 2011 at 04:07 PM GMT #

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