If you’ve stumbled upon this post, you’ll hopefully know (even though I wish you didn’t know) about FPIES, also known as Food Protein Induced Enterocolitis Syndrome
I’ll wish you hadn’t known about FPIES because it’s something that I wouldn’t wish on my enemies, even though, in a weird way, it’s made my family stronger (I think I can say that after almost 5 years of battling this rare disorder). There is a light at the end of the tunnel, even when it all seems like it could never get better, you learn to manage!
AND you’re here to talk about Disney World! So let’s dive in- I think you’ll like what you find.
Fpies and Disney? tell me more
So, you’re wondering, is it even possible? HOW is it possible?
I didn’t know it was possible either until I learned about it online.
Here’s the thing- Disney has Chefs at every restaurant (including the fast food type deals they call quick-serve) that are trained by F.A.R.E. in proper food handling procedures when it comes to food allergies.
Disney also can make accommodations for those with dietary needs, like the ability to bring in a cooler with food (wooo! this makes such a big difference) and having rooms with allergy cleaning.
We learned this when my oldest was just 9 months old, and we had finally figured out it was FPIES 3 months prior.
Quick Back story: We had done everything (all the elemental formulas, all these crazy tests, 9 pediatricians and 3 specialists to try to help this baby that wouldn’t sleep and cried all day) Finally, at 8 months my oldest was healthy, we had narrowly avoided a tube because I went on an eight food TED and started pumping like a mad woman.
And my light at the end of the tunnel, the light I needed when I thought about how my child would be different, and I was so unsure about the future that was robbed from me and my child, was that Disney World accommodated to food allergies.
I learned about it at 5 in the afternoon on facebook, loaded up the baby and my husband and first we went to Erin Mckennas in Disney Springs and I quizzed this poor woman behind the counter who whipped out an allergen binder and gave me the run down.
Especially because I couldn’t believe it. It seemed too good to be true. But it wasn’t. And I cried, I cried and held my precious and unique baby and felt that everything WOULD BE OK. Life with allergies would be ok.
Which is good… because all three of the kids have had FPIES in one variation or the other. Even now, my oldest two have two triggers, and the baby has quite a few, but we go to Disney World knowing that we can find safe food.
Here’s a pic of our very first character meal after learning about F.P.I.E.S.
But I’ve got serious anxiety about vacationing- FPIES SUCKS
Yes, my dear friend, FPIES does suck. And I can assure you that I’ve been in similar shoes, especially with my older two kids when we’ve tried to vacation places.
One time we went on vacation a few hours away and I fed my oldest spoiled honeydew melon when he was only 2 years old and he got food poisoning (and let me tell you, food poisoning is so much like FPIES it’s scary- again- wouldn’t wish it on my worst enemy)
Another time we did a 9 day family vacation 6 hours away at a place with our own kitchen and my FPIES baby had cross contamination exposure- despite us bringing all our food and cooking those entire 9 days.
I FEEL you- living with this CAN BE SCARY.
I won’t tell you that everything is going to be 100% perfect- BUT I will tell you that we have NEVER (after eating there the last 4 years multiple times a month) had an exposure at Disney World. The few exposures we’ve had have been from family or friends that didn’t understand how severe food allergies are.
I know I’m smiling in this picture, but this was our first ever meal at Disney World after learning that they had safe food (besides Erin Mckenna’s) we ended up at Tony’s restaurant in Magic Kingdom and our anxiety was unfounded- it all turned out great!
Ok so, how do I do this? How do we eat at Disney World with FPIES?
Step 1- bring your own food anyways. I know that sounds kinda silly after I just talked up Disney, but let me assure you that you will feel more comfortable if you know you can walk away from someplace that makes you uncomfortable.
I’ve left more than one meal when I had a server that didn’t understand (most recently at Beaches and Cream) and sometimes you can wait 30 mins for a meal from a chef (not always but never say never) so having safe snacks or meals can make a huge difference in your anxiety level.
Step 2- Look for safe food, not magical food.
You can and will find safe food (even with only a few safes) but you should know that it might not always be ‘magical and mickey shaped’. Many times those first few years my oldest would only get fruit (like berries and oranges and things that wouldn’t be cross contaminated) and then he graduated to a plain grilled chicken and fresh cut potatoes pan fried in olive oil .
Step 3- Be VERY specific
You have to be SUPER clear with the chefs and the server. In fact, we tell the server (not in a bossy way, just straight forward) that we have to talk about all the ingredients and it needs to be prepared without any suprises. It’s not enough to say ‘no gluten’ because spices can have gluten, sauce could have gluten, shared fryers can have gluten. It’s a PROTEIN allergy- so we need to be specific. Initially my older two couldn’t have any forms of Soy, now they can have lethicin, so we clarify that with the chef.
It’s you having a very clear conversation and asking. Do you have Udi’s muffins? Can you make a plain grilled chicken breast? Can you make fresh veggies with no sauce?
The Chefs aren’t mind readers- they WANT to help you- and you need to be simple and clear with what you need.
Step 4- Know your comfort level
Are you comfortable with shared fryers? Tell them that.
Does the thought of untrained staff make you have a panic attack? Avoid the quick serve at the parks (it’s different at the resorts)
Are you only avoiding one thing? See if ordering straight from the allergen menu is comfortable, or know that even with one or two triggers you still want to speak with a chef.
Step 5- Enjoy your vacation
I say this with jest, but really, I don’t know where I’ll ever be able to vacation with my FPIES kiddos while their this young. Maybe when they’re older, we can venture to other places, but Disney World LITERALLY is our safe place.
We can go, we can have fun, we don’t have to be scared out of our wits that the kids could have an exposure to a trigger.
I’m by no means saying through caution to the wind and that you can be totally free- but I am saying- that for once, you can feel normal ordering at a resturant. You can feel safe knowing that you will have safe food even if it is just a protein and a veggie.
People that haven’t dealt with life threatening allergies don’t understand, but we do. Once food becomes the ‘enemy’ your whole world changes.
And that’s why I’ll be forever thankful that Disney has made it available for those with dietary restrictions, especially ones like FPIES to have a magical vacation anyways.
Lastly, I do have a travel agent I have worked with that has a FPIES child. Normally I’m not a travel agent person for various reasons, but FPIES is one of those situations that warrant some extra help! Send me an email and I can get you her contact info (no, I’m not an affiliate, I get no kick back, just a genuine recommendation to help you plan your vacation with less anxiety!)
I know that my guide relating to all things food allergies at the parks would also be a TREMENDOUS help. Yes, you can wing it, but I also know how crazy planning can be when food is so essential to health. Let me know if you have any questions and I’d be happy to help- seriously.
Looking for something else? check out all of the Toddler posts for Disney World trip planning