We all want to explore the world, and our PKU and low-protein diets shouldn't stop us from seeing the world. I have traveled extensively and made many mistakes along the way. Let me start by saying this: the tips in this article should in no way replace the advice your dietitian gives you. Your care team is your first point of contact for everything that has to do with nutrition. So, with that in mind, here are some tricks and tips I've learned from my travels around the world.
Tip #1: Choose your destination wisely
If you're a new traveller, it may be best to start with short, local trips before taking longer trips to gain confidence and learn along the way. For example, a language barrier can make communication around PKU needs difficult. So, choose a destination that suits your experience, confidence, and needs. Remember, technology is evolving, and translation apps are making travel to foreign countries easier.
Tip #2: Ask for a doctor's certificate
Once your trip is booked, you should get a statement from your doctor or dietitian to confirm that you have a hereditary metabolic disease and therefore need to follow a specialized diet of low-protein foods.
Tip #3: Communicate your needs in advance
When you book your flight, please specify that you need a vegan or vegetarian meal so that you can snack on what you can eat on board. Contact your property to let them know about your condition. Send the doctor's note to your hotel and provide translated printouts for local restaurants. This will help them find and prepare the right food for you.
Tip #4: Pack smart
Packing all depends on your baggage restrictions and length of stay. I always carry a shaker bottle and powder formula to keep my luggage light. I also carry ready-to-eat AAMs (amino acid blends), filling and healthy low-protein snacks and ready-to-eat formulas in my carry-on luggage for longer flights.
Things don't always go according to plan, so have reserves. You should also pack lightweight foods like low-protein pasta, just in case. According to my experience, some restaurants will be happy to prepare these for you with a vegan sauce from their own kitchen.
Tip #5: Do your homework
Ask other PKUers about phe-friendly restaurants or local products. Also, check Tripadvisor for vegan restaurants, but remember to avoid ingredients such as nuts, tofu, seitan, legumes, etc. Otherwise, you can always have fries or a salad.
Tip #6: Locate local pharmacies or order *Nutricia's online delivery service
There are Nutricia PKU products (almost) everywhere. Find out which pharmacies have your favorites to refuel while traveling. Alternatively, you can check if your Nutrica Metabolics team can deliver your supplements to your location.
*Where available.
Tip #7: Look for Gluten-Free and Vegan Options
Fortunately, the vegan and gluten-free movement is growing, which means tasty, nutritious phe-friendly foods are more available than ever. As mentioned earlier, avoid protein-rich vegetables such as nuts, tofu, legumes, nuts, and seitan.
Tip #8: Listen to your body
As always, listen to your body. Rest and recover with nutritious low-protein foods if you experience any telltale symptoms. You can always contact local PKU organisations for help.
Tip #9: Treat yourself but make healthy choices
Yes, enjoy sweet treats during your travels. However, depending on sugary foods can lead to energy peaks and troughs. No one wants to be grumpy and tired while exploring. So, whenever possible, opt for healthy snacks to keep your sugar levels stable.
Tip #10: Enjoy!
Now that you're ready for your adventure, there's only one thing left to do: enjoy! Make memories, take photos, and remember that you only live once. Try to make the most of every moment.
My final advice is to prepare and plan each trip carefully so that you don't "starve" during your stay. Scheduling helps ensure that your blood levels are under control so that you can feel great while making the memories of a lifetime.
Dalibor Djumic has PKU and has worked closely with the Nutricia Metabolics team and the PKU community to demonstrate that a phenomenal life is possible with a low protein diet.