celiac disease Archives - Our Stable Table

May is Food Allergy and Celiac Disease Awareness month. I’ve been avoiding the topic because it just feels too big and all-consuming. This is something I deal with every single minute of every day as a mom to a toddler with FPIES, which in short, makes my son allergic to food. He’s just a few weeks shy of his second birthday and has exactly 17 foods he can safely consume.

Eating French Fries — Eating potatoes with Dad.

I mention his food allergies often on social media. I’ve written about it here and over on The Leaky Boob. I sometimes get lost in the specific restrictions and frustrations FPIES inflicts on our little family. I start to resent how profoundly our lives are marked by this disease.

But here’s the thing about being a parent to a remarkable kid with special challenges: it has made me a better mom, and on a larger scale, a better human.

I take nothing for granted.

After nearly losing my son to a stroke 36 hours after he was born, I am keenly aware that his presence on this earth is a gift. When his first foods made him vomit to shock, and he was restricted to only breastmilk and a little organic coconut oil for the first 12 months of his life, I wept with relief when he passed spinach at 13 months with flying colors. It never occurred to me to be thankful for every breath, every bite of food that passes my lips, but he reminds me. His breaths, his bites, his life all serve as a reminder to be grateful.

Empathy is a second skin.

I’ve always been fairly compassionate and empathetic, but having a son with chronic allergies has given me a sense of empathy I never knew existed. Any parent who has walked a rocky road with their kids can agree: You never look at a kid or family with special challenges the same way again. It’s no longer a detached empathy. It becomes personal to you, too.

I’ve become the anti-helicopter parent.

It’s counter-intuitive. My son is allergic to food. And guess what? Food is everywhere. Play dates, people’s houses, playgrounds, toddler music class, dog food dishes, restaurant high chairs and booster seats, trash cans, floors, walls, ceilings, shopping carts, faces, hands, mouths, toys…you can’t escape it. I have to be a helicopter parent in social situations, especially when other kids are present. He has so many restrictions, and when I have the opportunity to let my guard down in a food-safe place, I do. I let my son roam within my eyesight, climb and test his limits, and explore to his heart’s desire. I encourage him to play on his own and have age-appropriate adventures and only intervene when absolutely necessary. After seeing him suffer more in two years than many will suffer in a lifetime, the minor bumps, bruises, and messes don’t seem to bother my son, so I don’t let them bother me, either.

Beach Adventure — This kid loves the ocean, even when it’s 57 degrees.

I put up a fight.

Before becoming a parent, I often felt nervous expressing an opposing view point, or challenging authority. I feared losing friends (and even family) by becoming too opinionated or outspoken. Having a child with severe allergies makes it impossible to not offend people. I feel zero hesitation telling strangers not to touch or offer food to my son. I wipe my friends’ kids down with a wet paper towel before they play together. I speak often and loudly about respecting parents and their choices, allergies or not. I openly advocate for causes I believe in without apologizing, even when I know it will turn some people away. Most surprisingly, I don’t really care.

I question everything.

I call food companies and inquire about any hidden, unspecified ingredients. I inspect every space that has been deemed “safe” for my son. I question every test, procedure, medication, and diagnosis my son’s doctors try to administer, and generally annoy the crap out of them. And I have no problem educating doctors about the specifics of FPIES because most don’t know about the syndrome, and if they do, it typically isn’t much. It’s not their fault. FPIES is relatively unknown, and until this month, didn’t even have a medical diagnosis code. Considering I’ve spent the last 18 months immersed in research, and am an expert when it comes to my son, I don’t expect the doctors to have a firm grasp on his condition. I listen, I stay open, and I respect their training. Then I weigh the potential benefit and the potential harm and advocate for what is best for him.

DrAllen — My son with one of his favorite doctors.

I own my strength.

I pumped every single day for 21 months. I fought post partum depression and PTSD while figuring out my baby’s food allergies and dealing with insurance and doctors and mounting medical bills. I went on a Total Elimination Diet and stuck to it for a year in order to keep my milk safe and allow my son’s gut to heal, even though I dreamed about Eggs Benedict and wanted to submerge myself in a vat of guacamole. I had to be disciplined. My son’s life depended on it. I also fought to keep my marriage intact, even when the pressure of that first year nearly shattered us. Owning the hardship and vulnerable places allowed me to own my strength, too.

I crack jokes ALL THE TIME.

I feel my feelings, and I can get stuck in FeelingLand. Humor is one way for me to deal with the overwhelm. I have fully embraced my snark and wit and unladylike bathroom humor. Remember that quote “the only way out is through”? I choose to get through it with laughter and sarcasm. Because it doesn’t matter HOW you get through it, it just matters that you do.

Gratitude.

Empathy.

Trust.

Tenacity.

Curiosity.

Strength.

Humor.

These are the ways FPIES and my son have made me a better mom and human. I’ll take it.

Eff you, Fpies.
Carrie

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,
Carrie

Life With Food Allergies: How FPIES Made Me A Better Mom