FPIES on the Road

FPIES on the Road

I’m not sure I can call what my son has these days FPIES. Maybe more like FPIES in Recovery. His exposure to soy and dairy has been limited, but I have to admit a few mistakes with unlisted soy that ended in some severe but short-lived belly aches. Hunk hasn’t had a vomiting or diarrhea reaction since he was around 4 months old. I’m not positive this is because we’ve so carefully avoided exposure (yes, even during breastfeeding) or if he’s grown out of it.

In any case, I know it would be silly of me to force the issue before his fifth birthday, the age at which he is likely to have grown out of it.

Right now, at 2 1/2, Hunk is thriving. He has remained in the 75th percentile since his first birthday, and he never seems to feel left out when food is around. Partly because I always have something up my sleeve. Basically, I feel like ending our avoidance of soy and dairy right now would be more convenient for me than it would be for him. And I’m more than willing to wait if there’s even the slimmest chance it would cause him pain.

After about two years of feeding Hunk, being over-prepared has become old-hat. I’m so well-versed in the usual ingredients in foods that I almost automatically know what he can have, when I need to ask for an ingredients list and when to remove the food and firmly say, “NO. That will hurt your tummy.””

Part of why it feels easy to manage his FPIES is because his reactions are so far in the past. Another part is that we’ve found our little routine. I know what to buy, where to shop, what to make, what he will and won’t eat (he is a SUPER picky eater these days) and what questions to ask if I won’t be the one preparing his meals.

That last part is about to change for two weeks while we visit family in rural Oklahoma and Arkansas for our Christmas vacation. We will be completely out of our comfort zone as far as feeding Hunk, and I have to admit some serious trepidation about this trip on those grounds.

We’ve traveled with Hunk before, but that was to Daytona, FL, where we had access to lots of “alternative” food shops. Plus, the restaurants seemed accustomed to accommodating strange requests like scouring their frying pans and using only pure olive oil to cook some fish for a tiny human with “food allergies.” (It’s just easier to say say he has food allergies than it is to launch into a lecture on the blurry difference between intolerances and allergies to a waitress who just wants to fetch the next table’s beers from the bar.)

So, my first step in preparing for our trip is to make a list of ingredients or products we can’t do without. Then I have to find them.

earthbalancesoyfree211) One of the products we use most often is a soy-free margarine made by Earth’s Balance. I simply don’t want to be without this stuff. We cook just about everything with it, and Hunk eats it in place of butter on his gluten-free bread. I use it in baking for him instead of butter or regular margarine, and I can even make frosting with it.

2) Another important item is vanilla almond milk. Not coconut milk. Not rice milk. Almond milk. We love the texture, the flavor, and it holds up great in baking. Also, Hunk would probably drink a gallon of it a day if I let him.

3) Something sweet. The boy has a major sweet tooth. And when you’re not allowed to eat what you see other people scarfing right in front of you, a simple sweet distraction like a piece of chocolate doesn’t seem too much to ask, does it?

But did you know ALL commercial chocolate (that I’ve found anyway) contains dairy and/or soy? It doesn’t grow on the tree that way. Why is it so difficult to find a piece of chocolate emulsified in an oil besides soybean? Huh, Hershey’s, Reese’s, Nestle, Ghirardelli, and Godiva???boomCHOCOboom

Thank God for a little company called Enjoy Life. They have these wonderful chocolate bars and teeny, delicious chocolate chips that are 1) delicious and 2) allergen-friendly (I mean, if you’re allergic to cocoa, you’re allergic to chocolate). When we went trick-or-treating this year, Hunk gathered every piece of candy he got in his arms like it was real treasure. I carried the empty bucket. When the little bags of M&Ms started falling out of his hands because he simply couldn’t hold anymore, I breathed a sigh of relief that I would have to wrench one less poisonous thing out of his hands when we were finished.

Luckily, by the time we got back to our truck and loaded up, it was dark and I finally convinced him to let me hold the candy so I could “open it” for him. (Please don’t begrudge me that one little lie.)

I quietly hid the candy he couldn’t have and instead began breaking up an Enjoy Life “boomCHOCOboom” candy bar and handing it back to him in his carseat. He never knew the difference and he enjoyed stuffing his face with the allergy-free candy way more than his sister enjoyed her Smarties (which also have soy, you might be interested to know).

4) Something salty. This can get tricky. There are about a gazillion brands of chips, crackers, popcorn, and nuts out there. Probably 2/3 of them have soybean oil and/or dairy. We have more options – as far as brands, not variety – but it can be tricky to figure out which brands have which ingredients without seeing a label.

We always look for chips fried in an oil besides vegetable – unless it lists which TYPE of vegetable oil. A lot do, which is nice. But then there are the millions of flavors, none of which I’ve found that are safe for Hunk. He is stuck with plain potato chips or plain corn chips. But who wants to be stuck eating the same snack day in, and day out. I know we all have our favorites, but it’s nice to switch things up once in awhile.

GlutinoOne way to do that is with TOPPINGS. And it’s easier to top a cracker than it is a chip. That’s why we look for Glutino Original crackers. (Oops, this is starting to sound eerily like my advertising copy writing. Sorry.) They taste a lot like a saltine cracker, though the texture is less fluffy. You can put peanut butter, almond butter, tuna, hummus (if only Hunk would eat hummus), even margarine on these. Hunk even likes to munch on them by themselves. They’re not too salty and they have a nice, satisfying snap.

Just a few other items we use almost all the time that will be going on my call-ahead list:

Soy-free mayonnaise, soy-free tuna, raw almonds, Kinnikinnick Sunflower Rice Flax bread (or another soy-free, tasty and nutrient-filled bread, since it’s one of the only things I know he’ll eat these days), and Peter Pan peanut butter (one of the only commercial peanut butters I’ve found without soybean oil), gluten-free chocolate cake mix, and palm oil shortening.

Some of these might not even be worth buying if they’re marked up 50% from retail. I know the palm oil shortening – the main ingredient in his favorite cupcake frosting – is probably a pipe dream. But it will be totally worth it if Hunk never notices no one is offering him a slice of pecan pie.

  • Andyandstaceyturner

    Soy is the devil as far as our family is concerned, Our boy has fpies as well, but your post is insightful and your writing enjoyable! Thank you!!!