Coeliac disease and travelling

I didn’t grow up going on beach holiays or chilling out holidays, my family holidays involved being on the go, experiencing local culture, eating in local restaurants and cooking bbqs with produce from local markets. I can’t remember a time when I, or my family wasn’t planning our next adventure. Until a couple of years ago when I stayed at Sandals in Antigua I had never been on an all inclusive holiday. All of our holidays have been more about travelling and seeing the world, whether that was around the UK, Europe or long haul destinations. Some of our itineraries for our trips would be too much for some but as I never feel the need for more than a day at the beach it suits me and luckily Paul is the same!

Ten years ago I was diagnosed with coeliac disease. On the one hand I was grateful to have a diagnosis for how ill I had been for many years, and that it was something that could be controlled by diet. On the other hand, as someone who was living on a diet that upon diagnosis felt like it consisted primarily of gluten, I wondered what on Earth I was going to eat. Later thoughts turned to how I was going to eat whilst travelling, but the thought of not travelling any more never even crossed my mind. In fact, as I started commuting into London for my job and travelling more with Paul, I would say I have eaten on the go and travelled more in the last ten years than I ever did before.

During the earlier years of my diagnosis I travelled in the same ways as I had before I was diagnosed, I used translation cards but generally I didn’t do much research and social media wasn’t what it is today. I used to go to restaurants and hope for the best – as with the UK that can be extremely hit and miss and demoralising when staff couldn’t help or ending up with a really plain plate of food whilst others had all sorts of gluteney delights! This method can also vary in success between countries – I went to Vietnam and had an amazing time, finding even things like gluten free profiteroles as they were made with rice flour, whilst other countries could be far more difficult and made eating out a chore. I found Asia with its widespread use of soy sauce and America with a lack of cross contamination controls particularly challenging.

However, with the rise of social media, Instagram, bloggers and being connected to people in other countries in a way we never have before eating abroad has become much easier. I also changed my mindset of just turning up at local restaurants to one that involves researching and finding great gluten free food ahead of time so that the stress is limited whilst away as much as possible. My focus now is on the food that I can eat and finding great gluten free food all over the world, rather than just making do in whatever restaurant I decided to turn up in and it has made the world of difference. It does take away some of the ability to be spontaneous whilst eating out but for me it is worth it, and fortunately I tend to travel with very accommodating friends and family – most who have seen me terribly ill when things go wrong so know how important it is for me to eat safely and generally help advocate for me on my behalf.

Picking a destination

For me, I have never let coeliac control where I travel. I have booked holidays based on mine and my family and friends bucket lists and worried about food later. This is how a few years ago I ended up in Japan, somewhere that was top of Paul’s bucket list. Somewhere that until we booked it and I started doing some research that I realised I had seriously underestimated how difficult eating gluten free would be. I had presumed that Japanese food would be fairly easy to find gluten free, but it was the complete opposite with soy sauce found in everything and everywhere, combined with a language barrier it was a tough country to travel. I am glad I visited as it was the most amazing two weeks visiting Tokyo, Sapporo snow festival, Osaka and Kyoto but not somewhere I would recommend if you’re struggling with the concept of travelling with coeliac disease – it tests your patience and is a challenge with many restaurants refusing to serve me. It does seem to get better every year though, and if you are reading this and have a trip to Japan already booked check out #theglutenfreefridge on instragram who has just returned from a second trip, or try some of my other tips below which helped me be better prepared for my recent trip to Hong Kong.

As a first trip with coeliac if you’re struggling with the idea of travelling and eating out I would suggest a short city break to somewhere with lots of 100% gluten free restaurants or places accredited by the local Coeliac association. Cities will nearly always have the most gluten free options so places like Rome, Barcelona and Paris are a great place to start.

For a longer holiday I would highly recommend a trip to Italy. I know I didn’t believe that either, in fact for years I put off travelling to Italy once I had been diagnosed as I didn’t think it would live up to my time as a child in Italy living off of carbonara and calzone pizzas. This was a huge mistake! Italy is honestly the best place that I’ve ever been! Children are tested for coeliac disease so knowledge and rates of diagnosis are far higher than in other countries and with that comes great gluten free food that is widely available, with staff treating coeliac disease and cross contamination seriously (of course there are exceptions so still always ask the same questions and take the same precautions you would eating anywhere else!) but I have never been glutened in Italy.

Gluten free map

For all destinations that I visit I now download the local area on googlemaps so that I always have a map available even if I’m not online. On this I pin all the gluten free recommendations that I find so that if I get hungry at an unplanned time, or somewhere is closed or can’t cater for gluten free  (happens more than I would like despite the research) I can easily check the map for other local alternatives, rather than getting stressed at the thought of finding somewhere else. Doing this was an absolute gamechanger for me for finding gluten free restaurants more easily whilst away, without the stress of finding somewhere or people asking where I can eat and having no idea.

Online research

I always start with searching online for the destination on google. This normally brings up several blogs by people that have travelled to that destination (be mindful of dates and whether the person writing it is coeliac, many gluten free options that are recommended are not free from cross contamination). I tend to use the places recommended though as a great starting point, as well as the top ten gluten free restaurants on trip advisor. Reviews on trip advisor can also be searched using the word gluten in the search box to see what reviews gluten free guests have left.

Please always note opening days and times, it is too easy to be caught out this way and frustrating when you’ve travelled somewhere purely for gluten free food! (This was particularly a problem in Paris!)

Its also useful to search anything specific that you may want to find in a city, eg gluten free afternoon tea in Hong Kong or 100% gluten free in Hong Kong.

I have also found recently that the Schar website has gluten free recommendations and really helped me on a recent trip to Slovakia, a country that I didn’t find much information on outside of Bratislava.

Local coeliac associations

Much like the UK has Coeliac UK, other countries have their own coeliac societies and support groups that can be an amazing source of information. It is definitely worth contacting them for anywhere that you are travelling! The AIC in Italy has a free online resource that means anyone can find all the restaurants that they work with. This is another reason why Italy is so easy to travel as a coeliac. I 100% recommend this resource for anyone travelling there.

Coeliac Bloggers

I always search for gluten free blogs for a city, they provide such useful information for places that people have visited and their experiences. For this reason, I always write honestly in my blog posts including any experience with cross contamination and service in regards to being coeliac, as I have travelled specifically to recommendations only for them to not be as coeliac safe as I would want them to be. People may give you recommendations that are gluten free but may not have checked cross contamination protocols and when travelling I am always mindful of this. Don’t eat somewhere just because it has been recommended, only eat where you feel safe. Of course there are lots of guides written depending on the destination, but my ‘go to’ bloggers that I know check for cross contamination and all have extensive gluten free guides on their websites are:

1. Laura – My gluten free guide – lots of gluten free travel guides and runs the facebook group The gluten free travel guide.
2. Sian – Gluten free Mrs D – lots of gluten free travel guides.
3. Erin – Glutenfree globetrotter – invaluable resource for trips to New York. Runs the Celiac travel facebook group.
4. Alexis – Gluten free Alexis – highly recommend her blog for Orlando trips and honest reviews for many US destinations.
5. Jodi – Legal Nomads – in depth guides to Japan, Mexico and Vietnam with translation cards also available.

I personally also have lots of gluten free travel guides on my blog (with many more to come as I am seriously behind in writing them!)

Along with coeliac blogs, I also am a member of many coeliac facebook travel pages. These pages have a search function to be able to see what has been posted previously about a location or there is the option to ask questions if I can’t find any information. I find these pages particularly helpful when researching for a trip.

Local Guides and Instagram

I also search Instagram – search relevant hashtags such as #glutenfreehongkong to find posts of where others have found gluten free food in your destination, it also gives you a chance to read the caption that may suggest how the experience was. You can check the social media pages from this for the restaurants that the posts are made from, often with website links and it often links you back to local people who are regularly making the posts. I often contact local people with coeliac on Instagram to ask for their recommendations – you really can’t beat local experience! Most people are happy to help you in order to be able to explore their home towns and give advice.

I know that social media can get a bad reputation, but for me its been a massive gamechanger in my mental health and accepting being coeliac. My page helps me focus on the positives of coeliac and finding gluten free food to share rather than focusing on food I can’t eat and has connected me with so many people in the same position. When I’m using Instagram I also save amazing food posts that I see for places that I may visit so that I have the information when I need it!

Local cuisine and cooking classes

I always check online in advance what the local cuisine is like and what ingredients are normally in popular local dishes so that I have a better understanding of what it is I need to avoid. In the same way it can also be useful to check local labelling laws as products may not be labelled with ingredients as strictly as they are at home.

My favourite tip for travelling is to join a cooking class. An amazing way to cook up local dishes with a chef where you can be in control of what you put in your food. I also often take gluten free soy sauce to Asia where I have successfully done cooking classes throughout South East Asia by letting them know my needs and the food has always been incredible.

Translation Cards

Translation cards can be invaluable, especially in countries such as Japan where I found I had no chance to try and explain to the restaurant what my needs were. I have travelled on many occasions, particularly in Japan, Hong Kong, South America and more recently Eastern Slovakia where I have had to rely entirely on recommendations, translation cards and instinct! If necessary I stick to naturally gluten free food and don’t eat things like chips that may come from shared fryers.

I have used the following cards:

1. Coeliac Sanctuary – pay for small wallet sized cards with two languages on, that aren’t made from paper so are more durable. I have these in a few languages and used this card in South America.
2. Celiac travel – a far more extensive range of languages and they ask for a donation rather than a fee. Particularly handy if you need to download the translation whilst away or to be able to print out a few copies in case you lose one, or to be able to give them to waiting staff to take to the chefs more easily. For this reason, it isn’t the best idea to rely solely on having the translation on you phone.
3. Legal Nomads – Jodis are more in depth and I used hers whilst travelling in Japan.

I have found translation cards both a blessing and a problem. Basic cards may not explain your needs enough regarding cross contamination. More detailed cards can lead to chefs not wanting to serve you at all or getting confused when they list the ingredients that you can eat. Many staff reading the card may not be very literate and listing ingredients that you can eat I have found to normally be confused as a continuation of things that they think I cant eat.

Google Translate and Chrome

Definitely download the app google translate to your phone, it has saved me many times. It means I can ask specific questions even if there is a language barrier, most commonly about cooking processes. I still keep it simple but for example if gluten free pancakes are advertised and no one can communicate the cooking process I have just asked if they have a separate pan for gluten free pancakes or can they make sure a clean pan is used and they can give me a simple yes or no to advise. Some may not want to eat out when it comes to resorting to some of these measures, but these are ways I have been able to travel off the beaten track in South America and Asia for those that would like to.

The app also has a camera so you can take pictures of text to be translated – a feature that is so useful to check ingredients in supermarkets or on menus if an English menu is not available.

I have also found using Chrome rather than internet explorer useful as it translates the web page that you’re opening in English. Through this I have been able to check gluten free menus when they are not available in English.

Gluten free meals on the plane and snacks

Always book meals for the plane in advance as for gluten free meals 24 to 48 hours notice are required by most airlines.

I have had all sorts of experiences regarding plane meals, but I would say I have about an 80% success rate of getting my meal. I always double check at the check in desk for long haul flights if they have my gluten free meal noted as a couple of times it hasn’t, the crew have managed to get a last minute gluten free meal on the plane for me or at least get one on the connecting flight if there is a stop over. The last time Virgin got it wrong they gave me a £20 voucher for the airport to get a meal or snacks at the airport. [Please note these are only when I have booked the gluten free meal and it has gone wrong, not when I have forgotten to!] If I had left it until I was on the plane to ask I would not have got this voucher.

I also travel with gluten free sandwiches and snacks for anytime it may still go wrong and I have no options for food. They are also useful if the plane is delayed as airports aren’t normally the best for gluten free options. I generally travel with my checked in suitcase that has  anything like pasta, bread or pot noodles that I may have wanted to take in it or anything a bit heavy for my hand luggage. Most long haul flights allow two bags as hand luggage (check with your airline). I personally normally travel with my handbag that has my travel basics such as passport and headphones along with another bag that is a small holdall/weekend type bag that has my gluten free food in. This is light enough for me to carry as its just snacks, but it means I don’t have a risk of my gluten free food getting lost or crushed during the flight and that I have full access to it in the flight if I end up without a meal. Coming home I just put this bag flat packed in my suitcase or fill it with souvenirs!

A key point for travel snacks is to make sure that the things that you have aren’t all nut based. If someone has a nut allergy on a flight you won’t be allowed to eat them.

Check with your airline as some offer free additional baggage for medical reasons, but I have never felt the need to do this. Also check with customs of the country that you are visiting to make sure what food you are taking can be brought into the country. I only really travel with bread, cereal, pasta and snacks (blog post coming soon) so I have never had an issue at customs. I travelled to Santiago in Chile from the UK which is meant to have some of the toughest entry restrictions regarding food in the World so I worried a lot about what to take, and didn’t end up taking as much as I wanted for five weeks in South America. I declared that I had food that I was bringing into the country rather than risk a fine if I was caught and I was fine, and allowed in with the bag that I had. I have never travelled off the plane with fresh food though where restrictions may be different, it is just normally gluten free basics that I may not be able to find whilst travelling. I also pack a small container or sandwich bags to be able to take sandwiches out for the day or wrap up things that I have opened.

Air B n B

If you’re nervous at the thought of eating out it helps many to travel to places with a kitchen that you can cook and be in control of your own meals. Do check the state of the cooking equipment though and maybe take some foil and toaster bags to prevent cross contamination on well used pans!

Be mindful of who you chose to share with though as I have stayed in a huge air b n b with a group of friends. Whilst my best friends are great, staying with a bigger group of people that didn’t understand coeliac so well was one of the most stressful long weekends of eating I have ever had. I swear I had anxiety over uncontrolled crumbs the entire weekend and I wouldn’t recommend it!

Hotels

I personally stay at hotels more than self catering apartments. For hotels I email in advance so that they are prepared for my visit and most luxury hotels cater for coeliac guests (I highly recommend the Shangri La for being exceptional!) Many others may make sure that they have gluten free bread or cereal in for you too. If they can’t cater or the hotel is more basic with breakfast included I tend to take my own granola to have with yoghurts that are often gluten free (but do check) or at least have a bowl of cereal using their milk. Many breakfast buffets I might take something sweet with me as it is normally the pastries and cakes that you have to miss out on!

Luxury hotel restaurants

Five star hotel restaurants can be some of the best places to safely eat whilst travelling. Not a cheap option, but many of the big name hotels were able to cater for me in Hong Kong and is a tactic I would use for any travels in Asia where it can be more difficult to travel gluten free. I emailed lots in advance of my trip, and it meant the head chefs or catering managers were able to respond in many cases and be prepared for me – it didn’t matter if I wasn’t staying in the hotels, they still gave exceptional service even in their detailed email responses letting me know what they could or couldn’t do for me. I would definitely do this if I went to Japan again.

All inclusive

Whilst my experience of all inclusive resorts is limited, this is one type of holiday that I would base on gluten free recommendations as there is no point paying and going somewhere that is all inclusive to find that they cant cater. Sandals were brilliant a couple of years ago, and seem to have only improved from the social media posts I have seen about them since.

Cruises

Cruises tend to get really good reviews for gluten free food (do your research as with an all inclusive before booking). Last year I went on a Holland America cruise of Alaska and was pleasantly surprised. If you can find a good cruise option you will be able to travel by visiting different ports but only have to eat on the boat if you want so only one place to communicate your gluten free needs.

Find me gluten free app

This app is amazing and you should have it on your phone! On it you can search the nearest options to your location or you can enter a place and see what comes up! Do check the rating of the restaurants that come up and you can also see if the person who posted the review was coeliac. Even when doing lots of research, using this app when you get to your location can bring up hidden gems!

Naturally gluten free food

Whilst travelling naturally gluten free food can often be found – in places like the Caribbean I ate lots of fresh seafood and naturally gluten free meals to have a safe trip. However, in more difficult countries for gluten free food or when I’m struggling to find somewhere to eat I often seek out restaurants for cuisines that I know are often gluten  free – my go to meal options are Mexican and Vietnamese. Even in Macau where everything was fast food made using soy sauce I still managed to find myself a bowl of pho, and tacos have saved me on more occasions than I care to admit!

Supermarkets

I love supermarkets and hunting for new gluten free finds! I often end up using my hand luggage bag on the way home from a trip from all my gluten free bits I want to take home! Do be careful though, brands and factories vary so just because a brand or item is gluten free at home it doesn’t mean it will be abroad. This can also work the other way around too though and you may come across some unexpected finds!

Also stock up whenever you’re in large cities as off the beaten track gluten free alternatives may be much harder to find. I learnt this to my cost whilst travelling through Chile, I ate so well in Santiago that I didn’t consider buying extra supplies. When I got to San Pedro de Atacama (the Atacama Desert) I got by on naturally gluten free food, but I was in desperate need of some carbs and really wished I’d bought some more bread, crackers and cereal type items from Santiago’s supermarkets.

100% gluten free restaurants

On travel days, where possible I try to stick to 100% gluten free restaurants or if there aren’t any, places with the best reviews. Nothing gives me more anxiety eating out than the thought of getting on a long haul flight afterwards. As a result I don’t always eat much at airports, and 100% gluten free restaurants during the day for late flights work well for me.

I also choose where possible to stay near a popular 100% gluten free restaurant as this gives me a safe option to go to for breakfast near the hotel – we never want to travel far in the mornings. It also means that if you can’t find anything safe there is always a back up option near to the hotel.

Deliveroo and room service

For similar reasons to staying near a 100% gluten free restaurant, staying at a hotel with great gluten free options in it can be incredibly useful. Last year I stayed at The Edison Hotel in New York, which has Friedmans restaurant as part of the hotel. It is amazing for gluten free and you have no idea how grateful I was for a fried chicken burger after arriving at the hotel at 10pm after my long haul flight! In a similar vain I have also used delivery services such as Deliveroo and Ubereats to have food delivered to me after flights or a long day of sightseeing. On these occasions I normally order from 100% gluten free restaurants to ensure it is safe, and where possible pick somewhere that I am not likely to be able to make it to otherwise! I do this often when I am staying away with work rather than using the hotel restaurant that I’ve had no say in too.

Patience

I’ve had to change restaurants on so many occasions that you do need to travel with a bit of patience! Too many times I have travelled to a restaurant for it to be closed or for their cross contamination measures to be so poor that I’ve not wanted to eat there. Never feel like you have to eat anywhere just because of a recommendation and in the same vain never assume somewhere is safe and eat without checking for yourself as someone has recommended it. Staff, menus, restaurant suppliers and many contributing factors to whether your meal is gluten free can change and the person giving the recommendation may not eat as strictly gluten free as you do. This is why google maps and the find me gluten free app can be so useful to help find a nearby back up option.

Don’t book shared bathrooms!

A tip that takes away a lot of anxiety for me is having my own bathroom. In hotels, this is normally a given but in other type of accommodation even if its more expensive I will always have this. No one wants to get glutened, but for me I feel so much better when I’m travelling and trying new places knowing that if anything goes wrong that I have my own bathroom and space!

I hope that all these tips can also help you travel with coeliac disease. I see so many posts online from people that are worried to do so, and I understand the anxiety but for me I take as many precautions as I can to eat out safely and the risk of doing so is worth being able to travel the world. Let me know in the comments if you have any other top tips as I would love to hear them!

Happy travels,

The Sightseeing Coeliac x