International Travel with PKU
For the record, PKU should not pose any limitations on your life. There is no travel, food, or activity that can't be modified for the PKU lifestyle. Not to say there aren't a few extra steps or planning required but it can be done. That being said, many have asked about my experience with international travel. I'll share how I manage the diet when abroad but would love to hear how you do it!
The goal is to keep things as simple and as low pro as possible!
I do not always eat like a queen when traveling. Sometimes I do not enjoy the food I eat. That is just the way it goes. I can't emphasize this enough and the sooner you accept that, the sooner you can plan accordingly. Of course, all of my food is good when prepared correctly but when traveling that may not be an option. Often, my food has been sitting in my luggage without refrigeration for 12 to 24 hours at a time. Yes, I could pack a freezer bag. I could make special arrangements for toasters or bring a hot plate. I prefer to keep it simple. I will be eating the food either way so it is not worth the added trouble to me, especially when going through customs in foreign countries. I do not expect anyone to make accomodations for me or my PKU. That is crucial to understand when traveling with PKU. That way, I find myself pleasantly surprised when people go out of their way for me.
It is not just a PKU thing- sometimes you don't enjoy a meal put in front of you. This one sounded so good on the menu! Turns out it was basically spam. You win some and you lose some!!
I generally keep the lowest meal of the day to first thing in the morning. If I can punch my ticket then it leaves the door open to try other culturally unique foods throughout the day. This meal is usually in the form of a dry, low pro bagel or bread. If I can stay VERY low in phe and high in calories first thing it leaves several milligrams (or exchanges) to consume throughout the rest of the day. When I say very low, I mean less than 50 mg first thing in the AM.
For this, I usually pack low pro bagels and request the cafe or breakfast spot of the day to toast it for me and with a side of butter. Cambrooke's "blueberry breakfast bars" worked quite well this trip. These little goodies are perfect when you do not have access to toaster, microwave, or kitchen. They even survived a seven hour red eye flight and 24+ hours without refrigeration. One bar has 21 mg of phe and 220 calories. Generally, I would wake up, mix a formula and eat one of these bars. Then we would go out to a cafe for breakfast and I would order a plate of fresh fruit. This made the perfect low pro breakfast and left plenty of phe (+ fun) for the rest of the day.
My typical breakfast when traveling. Not pictured: me scoffing down low pro bread or biscuit in hotel room. I sometimes bring it to the restaurant too. It depends on the circumstance.
PKU Win: I expected a veggie sushi roll and it was wrapped in rice paper, not rice. (Sushi pictured here was for Nick).
PKU fail: the stir fry was half soy bean sprouts, which are loaded with protein. They said it was ONLY veggies. How many times have you heard that one?! Maybe they are a veggie? Who knows.
Always pack your food and formula in carry on.
Do not trust the airline! They will lose your luggage at the worst time possible. There is nothing that will come between me and my formula. My husband knows that, the insurance company now understands that and it is made very clear to TSA every time I move through their godforsaken security checkpoints.
Increase your formula intake throughout the trip.
I increased my protein replacement drinks to an equivalent of 80 grams of protein a day. I would mix sphere with Nutricia's 10 gm GMP mix in powder twice daily (30 gms in AM and 30 gms in the PM). In between, I would take one Lophlex in my purse for when we were out and about. If we were not traveling internationally, I probably would have brought more Lophlex but given that it is a liquid I did not think that was the safest option. There is no ADA abroad! I usually take a seventy gram equivalent daily so this was only a slight increase. I do feel it was enough to keep me filled up longer. The GMP products are key to managing my diet and reducing side effects from the large amount of formula we have to take in. It also tastes 1000 x better than any amino acid blend I have tried.
At my sister's wedding with my Lophlex! #nerd
Just had to post a picture of my gorgeous sister. She's my biggest fan but that is a separate post all together.
Stay in Air B and B's whenever possible.
Obviously having access to a kitchen is the gold standard for PKU travel. Now a days, vacation rentals are so easy to access there is no reason not to. For the second round of the trip we rented an Air B and B in Copenhagen. It turned out to be sunny and bright and also a penthouse that looked out over the whole city. However, we quickly learned that penthouse may not always be ideal in a city like Copenhagen that does not believe in AC or elevators. The windows were constantly open and the breeze turned out to be perfect. Every time I went up the stairs I felt the phe burning off as I was generally short of breath and clammy after the five flights of stairs. Apparently my physical exercise routine had not prepared me for that endurance challenge.
Having access to the kitchen allowed me to prepare a delicious low pro slice of toast in the morning with my choice of toppings and also a bowl of noodles for lunch. This helped my levels quite a bit and gave me more flexibility when eating out.
The view from our Air B and B! The sun doesn't set until about 10 pm in Copenhagen. It was so refreshing. Unfortunately for them, that means very short days during the winter.
We thought we were so funny pointing to the tops of roofs or landmarks. Apparently I was misguided on this one!
Pack lots of low pro snacks.
This is a must. Often before a dinner out I will eat some sort of no-bake snack that is a filling carbohydrate. My all-time favorite is Synder's Gluten Free Pretzel Pieces in the Hot Buffalo Wing flavor. [prepare for cliche]: these pretzels are LITERALLY amazing and I find myself craving them. The best part? There is about 10 mg of phe for 1/2 cup of pretzels. Basically free. You can't afford not to eat it. The other snack I like is Cambrooke's Savory Cracker Thins. They have sesame seeds and garlic seasoning that feels like you are eating something bad but they are super low! Either way, you have to find snacks you enjoy because that is key. Then, after loading up on a filling snack, all you need is a nice salad or veggie dish when out (depending on caloric needs).
Get creative! When I go out I always keep a Lophlex (premixed amino acid blend) in my purse along with a snack. If we are going to dinner I pack a piece of bread to put butter on when they serve bread and butter. I have found that Cambrooke Baby Boule bread travels well. I threw one in a ziploc baggy and it survived multiple flights and not being refrigerated. It was perfect to pull out at dinner when others received the Danish bread and butter.
My typical bag filled to the brim with low pro options. This shows Cambrooke's Baby Boule and a lophlex.
My appetizer at sissy's wedding reception. My mom was able to explain that I would need a vegan and low pro meal. They totally got it for the app but not so low pro with the main dish. Thankfully I had my trusty low pro bread packed and the salad bar they served was amazing!
Exercise.
This will help to lower your phe levels. I generally find my levels drop about one mg/dl after 30 to 60 minutes of intense vigorous exercise. Exercise will also help to combat the effects if levels are elevated (i.e. mood or anxiety). Running is one of my favorite ways to explore a new area and lucky for me, my husband is my running buddy. I would also be interested to see how much we walked when on this trip. That is another excellent form of exercise. Look at it this way, the more sightseeing you do, the less food and phe you are taking in.
Got a pretty solid work out in at a hotel gym. Other than that we walked everywhere!! Great exercise!
This one was at Kronborg Castle (Hamlet's Castle)!
Of course, had to do the Eiffel Tower, Arc de Triomphe, and the Louvre. Not pictured: Notre Dame. All that walking helped me burn off phe!
To summarize, international travel is totally doable and has become easier over the years. Lucky for me, we did not run into as many language barriers as I expected. Preparation is necessary for international travel but at this point it is second nature. Thankfully, I am able to adapt any food option easily. It helps if you travel to a city like Copenhagen that had extensive vegan options. I even ordered a vegan jackfruit burrito bowl while we were out. Turns out, I unknowingly ordered it as a burrito but was able to unwrap it easily and arrange it like a burrito bowl. It was topped with vegan cheese, jalapenos, and lots of guac!
Get creative with your meals! Do not be afraid to ask for modifications. Worst case scenario they say no. You will be pleased to find that more often than not, people are happy to work with you. However, I do notice more effort to accomodate me if I am extremely, even overly apologetic for requesting modifications. Do not act entitled (not that I think any of you are) because that is when I get the worst results! It is a tough job to work in the restaurant industry especially at a bustling restaurant. They may not have time to modify a dish and THEY DO NOT HAVE TO. We're not in Kansas anymore. You have to look out for yourself and prepare as if there will be no options when you go out for a meal. Thankfully, that is a rarity but when it does occur I am prepared.
I was even able to talk an airport pizza joint into preparing a salad with artichokes, eggplant, and olives, which they have for pizza toppings. Score!