Have you seen this hilarious video that went viral about crunchy people who say they are gluten-intolerant?
I genuinely like this guy, JP Sears. I’ve spent more time than I’d like to admit watching his videos and giggling when I should be doing other things…like being a responsible adult or going to bed. I think JP’s sense of humor and ability to parody popular Crunchy Culture is on point, and he is never malicious. It’s freeing to be able to laugh at myself and my own borderline ridiculousness. It’s part of how I keep my creativity flowing, sanity intact, and NOT take myself so seriously.
The gluten-free video, however, struck a different chord for me.
This is my son, E.
Freakishly adorable, right?
E was diagnosed at 7.5 months old with FPIES. It’s a long name for a complicated and relatively rare syndrome that makes my son allergic to food. Not some foods, MOST FOODS. He’s almost two years old and has exactly 15 “safe” foods. He has 14 known triggers that cause serious reactions ranging from chronic, explosive poop to vomiting-to-shock. We found this out the hard way when he vomited to shock TWICE after eating egg yolk and avocado.
Although we’ve never directly fed E wheat or gluten, he’s reacted to it severely through my breastmilk. He also vomited from a trace amount he came into contact with from a little friend. ONE CRUMB. And my baby was in pain for five days. I’m actually terrified of what would happen if he ingested a whole bite of something that contained wheat.
JP’s video really hit home how lightly our culture regards food allergies, and while I can see the humor, it also terrifies me as a mom to an FPIES kid. There is very little understanding and distinction between a sensitivity and an allergy. The media often uses the terms interchangeably. Outside of the medical community, ignorance reigns.
I also have a gluten sensitivity, (my stomach revolts and I’m Queen of The Porcelain Throne for hours), and though not nearly as severe as my son’s allergy, I still avoid it because it has a negative consequence on my health. And my parenting. Have you ever tried chasing a toddler when you’re also trying not to poop your pants? It’s like a horror film, but with diarrhea instead of blood.
And you know what else? It IS annoying. It’s annoying to ask (and be asked) if something has gluten at a restaurant, because believe me, I would much rather order straight from the menu. It’s also super annoying to ask my friends if they can disrupt their lives and accommodate my son for playdates and nannyshares. And god forbid we have to actually go visit people in another town or state, because they will suffer the annoyances of making their space safe for my child. It’s a huge damn inconvenience for EVERYONE. But I can’t control that and I’m thankful for friends and who help us expand our bubble. They do it because they love us, they love my son, and advocate in the most important ways: making the world a little safer for my tiny human.
So, what can you do?
Here are six reasons to advocate for people with food allergies:
- It doesn’t matter if someone thinks food allergies or sensitivities are pretend bullshit. Nobody knows what it’s like to be inside of your body except you. Don’t assume you know what someone with a reaction to food is experiencing.
- It doesn’t matter if gluten-free seems to be a trendy diet fad propelled by mostly hipsters and crunchy moms. For millions of people, it’s real and gross and painful and sometimes life-threatening.
- Denying the absolute gravity and seriousness of food allergies and sensitivities puts my child, and every other child who suffers from food allergies, at risk. I know. It’s so easy to mock. People with vulnerabilities are usually easy to mock, though.
- Joking about food allergies and sensitivities (because seriously, many folks do not understand the difference) makes some under-educated people feel safe in assuming that we’re a bunch of overreactive, overprotective parents, and that the only thing our children suffer from is helicopter parenting. For the record, I HATE being a helicopter parent. I would love to be able to let my kid eat a month-old chunk of granola bar he picks up off the floor. But the reality is, that granola bar could cause him to go into shock. So, yeah. I’ll freaking helicopter the bejeezus out of my toddler if it means we skip a trip to the ER.
- Making fun of allergies and sensitivities invalidates a very vulnerable population who needs you to take food issues seriously and advocate for understanding. It just takes one person who doesn’t take the allergy seriously to land a kid in the hospital. Or worse. Don’t be that person.
- Gluten, tree nut, soy, and a multitude of other allergies are not a choice. Make fun of my crunchy lifestyle. Make fun of my hometown, or my love of wine and brussels sprouts or young adult fiction. I’ll laugh right along with you because I CHOOSE THOSE THINGS. But seriously, stop with the food allergies. Food allergies are not a choice. They are something you can’t change, like your DNA or your race or your birth parents. Stop marginalizing an entire population of people who have no control over how their bodies react to food.
Now, go to JP’s video channel and laugh your ass off at his videos. I’m sure JP, like 97% of the rest of the world, means exactly zero harm. But the only way the world becomes safer for our most vulnerable little people is by raising awareness and spreading good information.
Still Loving and Missing My Boyfriend Gluten,