Polly - Travelling and eating out on a Low Protein Diet

About me: I am now on the wrong side of 35(!) and was born in Scotland where I was diagnosed with PKU at one week old. I have classical PKU and am allowed 5 exchanges a day. My family emigrated to NZ when I was young and I have been back in the UK for over a decade now.

A few years back I gave a small talk about eating out and travelling with PKU which was then published in the NSPKU News & Views newsletter. Feedback on both the talk and the article made me realise that the most important thing when travelling or eating out is to have the confidence to ask for help with the diet.

It's very easy, and I know as I did it for years, to think 'the diet is my problem so I'll just have to deal with it and not make a fuss.' But actually most people are happy to help, if you have the confidence to just ask. Be prepared to take a few knocks but don't let that stop you trying again!

When a co-worker was organising the office party she asked the venue to cater for me. When the venue came back asking if I could bring a lunch box, my colleague replied saying that wasn't acceptable and if they wanted our company to use their catering they would have to provide something. That made me realise that, when eating out, everyone expects good service for their money, so why shouldn't someone with PKU?

In my life I’ve emigrated twice with PKU and taken my diet & protein substitute travelling to over 15 countries. This has meant asking chefs in a huge variety of places to cater for a PKU diet. Even the meat-loving, cheese adoring, snail snaffling French were accommodating (after looking at me as if I was from outer-space!).

There are fewer knock backs than you think. Refusal to help is increasingly rare in the world of social media and online reviews. Remember that in the rare event that you are refused, you can always look elsewhere. I have found that the odd looks, and occasionally unexciting 'pasta and tomato sauce' dishes, have been far outweighed by the fantastic experiences.

Remember if you don't ask, you don't know what you might be missing out on!

On several occasions the service I've had has excelled that of my dining companions. There was the Michelin starred chef who loved the challenge so much he developed a 7-course degustation menu for me while the others looked on sadly over their a la carte plates. A chef in my home town in NZ used to love it when I came along as he could do something new - provided I called him a day in advance so he could buy market fresh produce just for me.

There is the second key ingredient: Planning.

Contact venues and people in advance if you can. If you have an event coming up, be it a holiday, a special night or a friend’s wedding, get in touch with the venue and see if they can help. Don't call them the day of the event, kitchens are busy places and need notice of something new. Be prepared, give restaurants, hotels & conference venues, plenty of notice, be as polite and clear as you can and you could be amazed at what happens.

As the online world grows there is much more help out there. Don't overlook the possibilities of exciting places to eat just because you can't find them. Wiki-travel listings of vegetarian restaurants helped us to find the tiny restaurant in Bruges, Belgium where I was able to order the three course set-piece dinner straight off the menu without having to change anything - a big highlight.

Here in the UK, more and more vegetarian restaurants are opening and some chefs are focussing on veggies rather than meat. One of my favourite places for a real treat is the Grain Store. Chef Bruno Loubet likes to focus on the vegetables taking centre stage over the meat and I can usually find things straight off the menu there.

With a little confidence and a wee amount of planning, those of us with PKU can enjoy eating out just as much as, if not more than, our friends and families.

Below is an example email I send out for hotels, restaurants, conferences etc. Be sure to ask your dietitian for help to adjust it to meet your dietary requirements before using it.

I always shoehorn the word 'medical' in there as much as possible so they don't think I'm trying out a fad diet. Remember if it is a larger party, you have a little more weight to throw around and if you are looking locally, say you are looking for a great local restaurant to go to often.

Dear ... ,

My party would like to book a table for a special event and I have strict medi-cal dietary requirements which I am hoping you will be able to accommodate.

I am on a medically prescribed low protein diet and cannot eat meat, fish, shellfish, bread, tofu, legumes and soya, nor eggs. I am also not allowed dairy products - though small amounts of butter and cream in sauces is fine and I can have meat based stocks. Usually the easiest is a pasta or rice based vegetarian dish, though with no cheese.

Please do let me know if you feel I can be accommodated. I am happy to speak to a member of your team about this or about adapting some of your current dishes.

With best regards,