Coeliac Disease
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“Gluten Free”…but Not Suitable for Coeliacs

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You would be forgiven for assuming that if something is labelled “gluten free” or advertised as a “gluten free option”, then it doesn’t contain gluten and is therefore safe for a coeliac person to eat.

Unfortunately, you would be wrong. In the catering world, gluten free does not = safe.

Several times in the last few weeks, I’ve walked hopefully into cafes and restaurants advertising gluten free options, only to be told that their “gluten free” options are not actually suitable for coeliacs, or people with allergies to gluten.

Who is gluten free food for?

“Gluten free” options in restaurants and cafes seem to frequently be aimed not at people with a medical need to avoid gluten, but at people who choose to “go gluten free”.

People willing to spend significant money on gluten free foods that they perceive to be “healthier”, “cleaner” or “lighter”, who do not suffer an autoimmune or allergic reaction if they eat gluten, or trace amounts of gluten.

In restaurant and cafe environments, this is presenting a problem for coeliacs. We get lured in by the promise of safe eats, only to find out that there is nothing for us after all, or we suffer the consequences after eating cross-contaminated, supposedly “gluten free” food.

The term “gluten free” seems to have become a commodity, a buzzword that can be attached to a product to justify a higher price, rather than the regulated safety term it should be.

Restaurants and cafes are hop, skip and jumping on the gluten free bandwagon, without pausing to implement the safety procedures that are crucial for coeliacs.

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Bad signage at a stall at Against the Grain. They usually serve wheat tortillas, but were serving corn tortillas for the day, and had forgotten to change a rather important detail. Cue lots of confused coeliacs and questions raised about cross-contamination.

Is this legal?

UK law states that “Only foods that contain 20 ppm (parts per million) or less can be labelled as ‘gluten-free’.”

Really?! I’ve come across countless restaurants and cafes where this is clearly not the case. Common issues include:

– “gluten free” foods that are fried in the same oil as gluten-containing foods
– “gluten free” bread that is toasted in the same toaster as regular bread
– “gluten free” cakes that are stored touching gluten-containing cakes

“No gluten-containing ingredients” is a term you may also have spotted.

According to Coeliac UK, this “applies to foods made with ingredients that don’t contain gluten and where good cross contamination controls are in place.” This term is not covered by UK law, and is no guarantee for good cross-contamination procedures in my experience.

If restaurants and cafes cannot guarantee they meet the 20ppm legal guideline to use the term “gluten free” and are warning people who react to gluten against eating their food, then why are they using the the term “gluten free” in the first place?

So have things really improved?

As somebody who lived through the coeliac dark ages (aka the 90’s), I still think that the popularity of the gluten free diet has improved things for us.

There are restaurants and cafes out there who cater brilliantly to coeliacs. 100% gluten free restaurants like Niche and 2 Oxford Place, and an increasing number of regular restaurants that offer decent gluten free options and take steps to minimise cross-contamination. (To name a few, Tilley’s Bistro in Bath, the Cote Brasserie and Le Bistrot Pierre chains, White Rabbit Pizza in Oxford.)

I’d be surprised if anyone longs for the days when eating out was a baked potato or nothing, and bread was something that only came on prescription.

However, as gluten free options become prevalent in UK restaurants and cafes, I am getting increasingly frustrated by this gap that exists between “gluten free” and actually safe for coeliacs, and I’m not sure what the way forward is.

I’d be interested to hear other coeliac’s and caterers thoughts on this. Have you come across this when eating out? Do we need tighter regulation around using the term “gluten free”?

Write me a comment and let me know.

Until next time,

Issi x

Check out Coeliac UK’s website to find out more about:

– How businesses can cater for customers with coeliac disease
(and why it is profitable)
– UK laws regulating gluten free labelling.

Sign up for your FREE printable Coeliac Guide to Eating Out Gluten Free in London

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35 Comments

  1. Pingback: Blogging: Opinion Piece – Issi Gane Digital Portfolio

  2. Catherine says

    The key here is education on coeliac disease. The impact it has, and to make caterers and therestaurant industry aware of the complexity and danger. Not only chefs but waiting staff too! If they only viewed gluten like raw meat and ensured everything is clean and not contaminated. After all they wouldnt dream of prepping raw meat then touching or using utensils to prep other food! Having a different colour of board (purple?) Solely for gluten free prep? Surely it’s not rocket science!

    • Issi says

      Comparing the cross-contamination to raw meat is a good way of illustrating it. I’ve likened it to poison before – a lot of the time people just don’t get it! As you say, training is needed across the board for it to be really safe for coeliacs.

  3. Julia says

    I agree there does need to be better labelling. I think the current ‘gluten free’ label is also aimed at people like me – I’m not coeliac; I have IBS that is worsened by eating gluten. Cross contamination isn’t an issue for me and unfortunately for you I am part of a growing group of consumers (possibly larger than coeliacs?? I don’t know). I have a friend who has been a coeliac since the early nineties and we always have looked for the Coeliac Society approval sign for her, never trusting food stuffs otherwise. But because both IBS and Coeliac are growing groups it is imperative that some distinction is made.

    • Issi says

      I agree Julia, a distinction is necessary now that people eat a gluten free diet for multiple different reasons. Hopefully as more coeliacs speak up about this, awareness of the issue will increase.

  4. Hugh says

    I have had many a silly conversation in restaurants re Gluten Free. Fried food is always a classic issue. “if you can eat potato?, then the chips are fine” I ask if they cook anything else in the oil only to be told they cook the fried fish in the same fryer. Or a GF pizza coked in the same oven (doubtless also using the same peel and cutter) as the normal Pizza. Or at the other end of the scale ” we cannot guarantee that anything here is Gluten Free”. I know of a Fish and Chip shop in Peckham that has “Gluten Free Batter available” in the window only to be told when I went in that they have a normal batter as well and i’s all cooked in 1 fryer. High end restaurants seem to be best, as well as some chains (e.g. Leon). In the unlikely case you don’t know, there is a very good GF café on Upper Street Islington, it’s right by Barnsury Street opposite twentytwentyone

    • Issi says

      Cheers Hugh, do you mean Artisan Gluten Free Bakery on Upper Street?

      Frying in the same oil happens far too often! I’ve even been told by chefs that “the heat kills the gluten”. Um, no!

      Leon is great, and as I say above there are restaurants and chains who ‘get it’. I am grateful to have more choice these days, despite the issues with cross-contamination.

      • Hugh says

        Yes I checked and it is indeed the Artisan Gluten Free Bakery (I’ve read more of your blog and found that along with Leon. On a separate note I have been making GF Quiches. Phil Vickery’s pastry recipe using stork and an egg worked well, but also the Doves recipe of gram Flour, butter, Xanthan and water works well. Any recommended recipes if you are not buying a mix?

        • Issi says

          I love quiche, Hugh, but I have to admit I’ve never tried making it! I buy GF ones from Batch #5 (a little gluten free bakery in Bath) or from Marks and Spencers. I think NoG also do some as well.

          Thank you for the recommendation of recipes – I must give it a go sometime.

  5. I’ve had some awful experiences in restaurants – quote: “Oh, you’re coeliac? You can’t eat here. We’d have to be wearing hazmats suits to serve you.” Thank-fully I’ve learned to ask after some bad cross contamination adventures. But man, the ignorance really gets me angry.

    • Issi says

      Hazmat suits?! That’s a new one…! I have many times been told that *nothing* on the menu will be safe for me to eat, which is a bit of a rubbish feeling.

  6. Benjamin Keith Richardson says

    I have no doubt that the popularity of gluten-free is overall a positive thing for us coeliacs but absolutely recognize the dilemma you have described well Issi.

    I do personally engage with the venues and producers that have gotten things wrong and adopt a stance of thanking them for venturing into gluten-free catering combined with firm feedback and direction about how to do so properly and safely.

    It is really satisfying to observe when this has a positive impact and their approach changes and I would really like to believe that this pays forward in the form of other people not getting glutened and more and more venues and foods being safe for gluten-free folks.

    • Issi says

      I agree that overall the popularity of the diet has been a positive thing for us Ben, and like your stance of trying to give positive and constructive feedback.

      I try to do this as well, but sadly often get a bit of a ‘meh’ response back to suggestions to avoid cross-contamination. I think the tricky thing can be getting to speak to the right person – waiters/waitresses and cafe assistants may not have much involvement or power to change these things.

      It is definitely good to speak up and try to help places improve, though!

  7. Mandy King says

    I totally agree, I feel less confident about eating out now than I did 10yrs ago even in places that have been accredited by the Coeliac Society. I think many caterers consider gluten intolerance as a ‘fad’ so don’t take it seriously

    • Issi says

      My brief experience working in catering confirmed this – a lot of people will have heard of ‘gluten free’, but don’t have a good understanding of exactly what it is, or why avoiding cross-contamination is important. It is also very busy and fast-paced behind the scenes, so I can completely understand why places have difficulty in accommodating people like us.

  8. Giulia says

    In Italy we have a huge amount of celiacs and you would say that it comes with its benefits. We have an acceptable variety of products in almost every market, but when it comes to catering there’s not a wide choice. AIC certificated restaurants are very few and the ones that promise gluten-free food are not to be trusted. One time I’ve been served – by mistake – a 100% glutened pizza that I luckily recognised for its appearance and sent back. Personally I think it’s better they tell you they can’t guarantee gluten free food! I’d like to stress another issue: here gluten free bars open around 10:00 am while other bars are available from 6:00 am. Does it happen there as well? How is someone (who wants to have breakfast out for once in their life) supposed to benefit from it?

    • Issi says

      I agree it is better if they are honest if they really can’t guarantee that food is gluten free, but I wish they wouldn’t label it misleadingly.

      I may have had a lucky experience, but I found Italy (Sicily, specifically) amazing as a coeliac. Waiters in restaurants and cafes took coeliac disease much more seriously, and did not assume that I was a ‘fad dieter’ as many do in the UK.

      What gluten free bars do you have?! For breakfast / brunch? If you are ever in London, I can recommend you a few places to get a nice gluten free brunch. :)

      • Giulia says

        I’ll get in touch then! xD Yes, there are restaurants well informed on the disease too (consider that coeliac disease is considered a sort of side effect of the Mediterranean diet!), I think each time it is a matter of luck to find the right one. If you come to Italy again, let me know, I’ve found few places worth trying in Florence, Pisa and Rome! About the fact that nowadays everyone seems to follow a gluten free diet (that is ridiculous because you may feel better, but you don’t lose weight at all!) I believe it to be dangerous for coeliacs because 1) they devalue the importance of the disease 2) they devalue the importance of cross contamination!

        • Issi says

          I hadn’t heard the Mediterranean diet theory… *googles*

          Thankyou, I may be coming back to Sicily again soon but would also love to go explore the rest of Italy.

          Yes, the weight loss thing is a popular misconception here…if you cut out carbs as a whole you may lose weight, but if you just replace bread, biscuits, cake etc with a gluten free version, that is not healthy!

          • Giulia says

            Well, it’s pretty simple. It says that consuming modified wheat (because it IS modified!) by people with genetic predisposition may increase the risk… That could explain why the exportation of the Mediterranean diet around the world has increased the CD rates not just in Italy, but outside ( in Japan for example!) as well.

  9. Vanessa says

    I live in Lisbon, Portugal and we have the same problem here. I actually thought it was much easier to be celiac in the UK, at least in London. When I visited London, I checked with Coelic UK beforehand and found a lot of places I could eat in. At one pub, the waitress even alerted me not to eat the French fries as they were fried in the same oil as the calamares. But here in Portugal, a lot of new companies are arising with organic/vegetarian/vegan menus that advertise gluten free options, but when contacted affirm those options are not safe for celiacs. Our celiac association has been doing a wonderful job though, advocating for safe menus in more restaurants and cafes. Last year, McDonald’s Portugal launched their gluten free menus which go through a tight quality system to ensure they are safe for celiacs. We have a gluten free program for the certification of safe restaurants, cafes, bakeries, but only a handful of those exist here. In the great majority of restaurants, the cooks and staff are not well informed about gluten and sometimes it is very difficult to be sure about a meal’s safety. I usually order grilled fish or meat with rice/potatoes and salad, but still we never know what goes on in the kitchen. It’s good to know this tendency for gluten free not safe for celiacs is happening in other countries, maybe something can be done when a few countries come together for the European legislation to change.

    • Issi says

      It’s interesting to hear that you are experiencing the same problem in Portugal, too – indeed, perhaps this is something that could be looked at on a European or international level. At the moment the laws vary from country to country, but coeliac disease is the same illness wherever you are!

      Yes, there are lots of gluten free options in London (I’ve collected my favourites on this blog!) and general awareness of coeliac disease / what gluten is is improving which is great…it’s just this cross-contamination issue which is the problem.

    • benjac64 says

      Visiting Porto in Oct can you suggest safe places or website where I can check out safe places greatly appreciated Ty

  10. Sheila Niven says

    Definitely agree with this one as I’ve been given gluten free food which I’ve discovered later, to my cost, has definitely not been gluten free but when you’ve eaten it how do you prove it? On one occasion I had a gluten free brownie which was all wrapped in a sealed bag so I thought safe to eat. I later had a full blown gluten attack which wasn’t nice. When I finally managed to get home and phoned the cafe they gave me the telephone number of the supplier. I rang them and was told that staff are always told to wash the cooking bowls and utensils when making gluten free foods! So all made in the same kitchen then and using the same utensils! So what if the staff member forgets to wash the bowls/utensils beforehand then? Are they going to confess and throw away the gluten free ingredients? No they’re not. They’ll just carry on and hope for the best. It’s really put me off eating anything unless I’ve cooked it myself or if it’s from a big supplier that I trust. This has also happened to me on cruise ships too but they just say I’ve been sea sick as they couldn’t possibly have made a mistake.

    • Issi says

      It’s very difficult if not impossible to prove, Sheila! Very frustrating.

      That’s scary about the wrapped gluten free stuff being contaminated – I am more likely to assume that wrapped stuff is safe too.

  11. We’ve been in son awful situations whereby we’ve popped into a cafe stating glutenfree, even done research online beforehand and been so disappointed. Any parent will admit to never wanting to tell their Coeliac/Diabetic daughter that she’ll have to have a jacket potato for her Sunday dinner …. It was Bourton-on-Water, booked table for 7 of us, heaving busy village, researched and booked in advance. When we got there we were told yes they had gluten free and gave my daughter the jackets menu…..grrrrrrrrr. With a meager snack in my bag and no hope of getting in anywhere else, plus factor in Beth needed to eat as her blood sugars were now dipping far too low, we had to stay and eat….I had salad in protest with Bethany! America was utterly fabulous, food prepped from scratch, we went to blizzard beach at Disney, I asked what was GF the server grinned pointed at the giant board above their head and said ‘THAT’ Beth had fresh chicken in corn crumb with homemade chips in separate frier!

    • Issi says

      I’m with you…with one restaurant I phoned up twice beforehand to confirm coeliac-safe gluten free options were available, yet when I got there they had used their “gluten free” fryer for gluten, which left me with about 2 things on the menu. So annoying.

      It must be especially hard as a parent, not wanting to see your kid disappointed.

      America sounds great!

  12. Neither coeliac nor caterer, but hope you’ll accept a thought or two!

    I don’t think there is a single straightforward solution. It has to be multi-factorial. Advocating – and blogs like this – are terrific. Initiatives like Coeliac UK’s GF catering accreditation and the FreeFrom Eating Out Awards will help. There are dozens of allergen trainers out there, knocking on doors, making themselves known – emphasising to food service providers how ‘allergy savvy’ they need to be. Referring establishments to EHOs may do them good too. They’re in the best place to advise.

    And word of mouth. Sharing and recommending good restaurants and outlets should never be underestimated. Those not meeting the grade will soon wise up to the fact that to get a good reputation, they have to wise up to allergen and GF laws – properly.

    • Issi says

      Thankyou for your thoughts, Alex.

      I am all for sharing and recommending good places to eat out, and agree that being vocal about what is good and what is unacceptable is important. We need to spread the word about the places who really ‘get’ coeliac disease, and tell places that don’t make the grade what they are doing wrong.

      It’s good to hear that there are organisations working on our behalf. :)

    • benjac64 says

      Agree Alex as a food allergy awareness trainer it is hard getting businesses to do real F2F training, as currently not a legal requirement – elearning is a cheap option but less informative spoke to an employee who works for a chain who openly admitted older generation struggle with Elearming so ano person completed Trainjng on their behalf only when there have been a few prosecutions will businesses sit up and take notice believe there are a few in the pipeline.

      It should be noted when businesses make a factual statement that A meal is ‘gluten free’ ‘low gluten’ ‘suitable for agluten free diet’ these clearly mean gluten free and precautions and Trainjng should be in place to prevent CC- if not then local EHOs should be e informed to give guidance as appropriate fatc.co.uk/blog

      I am not coeliac but gluten and lactose free but follow strict cc procedures and expect the same when j eat out. Recent stay in hospital was a complete nightmare !

      • Julia says

        I wouldn’t assume the words ‘low gluten’ to mean gluten free.

  13. As you say it’s actually illegal to state “Gluten Free” if it’s NOT suitable for Coeliacs. It’s Environmental Health’s job to police this but unfortunately they don’t have the resources to be proactive. The only recourse is to report these places to EH and then they will investigate and train where necessary. Of course this can have the knock on effect of the caterer deciding not to offer Gluten Free at all. Personally I’d rather there were less places, if the ones remaining knew what they were doing and we could be confident to eat in them.

    • Issi says

      Well put, David. I was wondering if there is something I am missing legally, as so many places seem to break this law!

      To be honest, up to now I’ve felt reluctant to report places to Environmental Health unless they are really careless. My MO when I come across blatent cross-contamination is to try and inform, but sadly I am finding that caterers often don’t care or aren’t willing to make the effort to address it.

      Perhaps consistently reporting it is the only way things will change.

  14. We just came back from America, where my Coeliac husband was asked in almost every restaurant “allergy or preference?”
    In some places we could see into the kitchen area and his food was prepared on separate boards, by glove-wearing staff.
    The menus themselves weren’t labelled as well as ours are, there was more asking and checking for us, but the care taken was good.
    Maybe “Allergy or preference?” Should be the norm here too.

    • Issi says

      That’s interesting Natalie – I have been asked this in a few places in the UK, but it is by no means the norm. It sounds like the restaurants in America took safety seriously. I am quite glad to be asked this, as it shows some awareness of the issue, and means that they might have a different procedure for coeliacs and people with allergies.

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