What Food Allergy Parents Want You to Know

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This post was originally published on Semiproper on April 18, 2013. The feedback I received from this blog post and other allergy related blog posts that followed inspired me to create a brand new space for parents with children who deal with food allergies, environmental allergies, asthma, and eczema. Thanks so much for visiting Scratch or Sniff!

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Remmy was 18 months old, sitting in her highchair, and Sophie was a newborn. Jack was feeding Remmy crackers and hummus and I noticed that Remmy’s face looked strange.

“Is her face red? Or is it the lighting?”

“I don’t think it’s red.”

I leaned in to look at her closely, and I knew something was very, very wrong. I reached for my phone to call 911. Her face was turning bright red, hives were spreading, and her eyes were swelling shut. Jack frantically searched our closet for Benadryl, only to find none. I left my newborn at home with Jack while Remmy and I raced to Yale’s ER in the back of an ambulance.

That night we discovered that Remmy is allergic to sesame. Tahini is made from sesame. Tahini is in hummus. Unknowingly to us, this was the beginning of our lives as food allergy parents.

please-dont-feed-the-children

Fast forward four years later, and we have two girls with severe food allergies, and one girl (the newest one, Minnie) that’s due for her first round of allergy testing. At any checkup, a nurse will ask me what they’re allergic to. I rattle it off, in this same order – dairy, eggs, soy, wheat, peanuts, tree nuts, sesame, and mustard.

We’re not alone. We’ve met other food allergy parents, and the one thing in common that we’ve all experienced is this: people don’t quite believe us.

One more time. People don’t believe us.

Not in a, “NO, you’re lying” when I have to clue someone in about allergies, but many times people think we’re exaggerating or that these are our preferences – the same way a person chooses to be a vegetarian or wear pants on Thursdays.

[At a birthday party]
“Oh, so Sophie’s lactose intolerant?”
“No, she’s allergic to dairy.”
“Can’t you just give her Lactaid?”

[At Target.]
“Your kids are gluten-free?”
“They have a wheat allergy.”
“Everyone’s gluten-free these days. Unless they have Celiac, they’re not really ‘allergic’ to it.”

If someone spills milk on Sophie’s arm – without her ingesting it – she’ll immediately break out into hives and have an asthmatic reaction. If she eats wheat, she’ll be awake at midnight, hooked up to a nebulizer – and then again in four hours.  If Remmy comes in contact with peanuts, she’ll have an anaphylactic reaction, start vomiting, and I’ll have to stab my four year old in the leg with an Epi-pen and hold it there while she cries.

These aren’t preferences. These foods are poison to them.

If you find me at the park this summer and ask to look in my tote bag, you’ll find no fewer than four Epi-pens (you’re supposed to have two for each child, because sometimes one Epi-pen isn’t enough in the case of an allergic reaction), Beandryl tabs, and an inhaler among the juice boxes and the sunscreen.

If it’s your child’s birthday and you’re bringing cupcakes into school for him or her, the teacher will notify me so I can bake two – using flaxseed and other substitutes – for my daughters to bring in so they can celebrate with your child.  Sometimes there’s little notice, but if I don’t have time to bake a cupcake, I’ll send them to school with two allergen free cookies. They’re kind of a weak substitute, but it’s better than them feeling left out.

allergic-to-soy

When we first got the entire full list of “they can’t haves,” we were skipping birthday parties and celebrations, simply because I couldn’t bear the thought of them not being able to eat a single thing at a party.  Now we improvise and adapt and do a lot of cooking in our home. We pack lunch boxes when we head to parties and we usually bow out right before the lighting of any candles.

Many families end up homeschooling their children, because being at a school – exposed to tons of food “dangers” is just too risky. We’ve seriously considered that route, too. Thankfully, their preschool director has been so incredible about making sure the girls are safe. We send in snacks for them to share with their friends, and their teacher makes sure that nary a peanut crosses their table.

Food allergy families’ grocery bills are outrageous. We have to buy rice milk, allergen free bread, flour that you can only find at Whole Foods or on the black market, and rice cheese. We rarely go out to eat, because even if we ask for their meal to be cooked with olive oil, how do we know that the chef didn’t JUST cook something with butter on that same grill top?  (If anyone starts a food-allergy-friendly food truck, I will be your biggest supporter!)

Here’s what I’d like for people to know:

– When you poke fun at children like mine, it’s hurtful. Food allergies are life threatening.
– I don’t expect you to cater a menu to the girls’ allergies.  If you invite us over, we’ll gladly join you – and pack a couple of lunchboxes.
– Please don’t feed or offer any food to my children without clearing it with me first.  That innocuous looking cracker could mean a trip to the ER for us.
– Just because you can’t see something (like autism or a food allergy or anything that you cannot physically observe with your own two eyes), doesn’t mean it’s not there.

I know that this stuff is kind of new.  Before I had kids, I wouldn’t think twice about unwrapping a piece of candy at a party and handing it to a child.  I know better now because I’ve been through the trenches of being a food allergy mom. I don’t expect anyone to know everything or treat my children differently, but I’m hoping this post sheds a little light on what food allergy parents experience, and I’m hoping it encourages the fellow food allergy mom or dad.

And if you’ve ever invited us to a party and put aside a little fruit plate or bowl of sorbet for my kids, thanks. :) It means a lot to them (and me!).

Roo Ciambriello

If Scratch or Sniff founder/editor Roo Ciambriello could list all of her favorite things, they'd include her sweet little family, food trucks, and every AMA Snoop Dogg has done on Reddit. Roo is a copywriter out of New Haven, Connecticut, and loves writing fun stories on the backs of potato chip bags and cereal boxes in Whole Foods, Target, Nordstrom, Kroger, y mucho mas. Roo creates voices for brands, ghostwrites for celebrities, writes a personal website, and is (much to the chagrin of those around her) pretty active on Twitter. You can also find her providing commentary on advertising/branding at Adweek and eating fajitas on deadline days.

13 Comments to What Food Allergy Parents Want You to Know

  1. Nichole K

    I read this on Semiproper when you first posted it and just re-read it here…and I followed your new blogity-blog-blog :).

    I hate to say it, but I am an adult with severe food allergies and, unfortunately, the disbelief continues beyond childhood. I’m 28. At least I look slightly older than a teenager now, so chefs, servers, etc. tend to take me a bit more seriously. Chefs are usually great when they learn that you’re not, in fact, trying to be a pain, but really do need to know to avoid a hospital trip due to their restaurant.

    Only advice I have for restaurants (and even meals at family/friends homes) is to KEEP ASKING QUESTIONS, especially if the person answers promptly something like, no we don’t use soybean oil at all. I scream internally, “LIES,” as I smile and ask them to double check please since, “I’m sorry but, I have life-threatening allergies and I’m not just being picky. No really. Yes, as in might kill me.”

    Just for kicks, my anaphylactic allergies are: peanuts, tree nuts, soy and legumes (i.e. peas, lentils, most beans). There are several more that I can get away with eating but probably shouldn’t so I try to avoid them.

    Some good news is that I have been able to add back in rice and some select beans recently (which is a huge deal to me. Hello chili!) Hopefully your girls will continue to have less restrictions as they get older too.

    Keep faith!

    PS: Have you tried the dairy, nut and soy free chocolate chips from Enjoy Life? They’re great and I’m glad I discovered them :). My waistline disagrees though…

  2. I think I am going to be commenting a lot on here:) I love your writing style as a 23 year old with Celiac Disease I get all of this. People ask me ALL the time about what will happen to me if I eat gluten. The questions and ridiculous comments about my very frustrating diet are hard for me to handle as an adult. Mad props to you mama bear.

  3. Leigh

    I missed this post originally. I never knew all the things your girls are allergic too, I just knew my son had some allergies in common with them. Our grocery bill is out of control and there’s nothing we can do about it. I read money saving websites and the grocery shopping tips usually don’t apply to us. I take food everywhere and the epi pens too. I’m allergic to shellfish, walnuts, pumpkin, cranberries and most fish (all but catfish, salmon and tuna) and I am lactose intolerant. My son is allergic to eggs, peanuts, diary, wheat, corn, soy, sesame, peaches, mangos, strawberries, raspberries, blackberries, kiwi, and apricot. We get questions and crazy comments from people all the time.
    “Why can’t he have hummus? It’s beans!”
    “Butter is diary?”
    “He’s allergic to wheat? Don’t you mean gluten?”
    It’s frustrating!!! We’ll homeschool because it’s just too much to handle and way to much risk. We had to pull him out of daycare because I walked in to see him being fed his allergy free food while the child next to him was eating peanut butter and crackers. And they were using their peanut butter covered hands to help my child. I just about came unglued to say the least. Allergy free hugs to you for all you’ve gone through and to your girls too.

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  5. Heather

    I love this and had to share it in FB. Can’t tell you how many times as an allergy mom I’ve had similar conversations:

    “your daughter is allergic to milk? I know so and so who is lactose intolerant, what about lactaid?”

    “No she can’t have that either, she drinks coconut milk or water”

    “What about goats milk?”
    (Same response)

    “Soy milk?”

    “Also allergic. Coconut milk works for us”

    “Almond milk?”

    (same respone to Soy question)…you get the idea. It shouldn’t matter if this was a preference or an allergy, I said coconut milk works for us. Nice to know we aren’t the only ones.

  6. Mel

    Hi,

    To make a long story short over two years ago I got a stomach infection and from then on I have recently developed some severe allergies, to gluten and soy. I have been gluten free for over a year, but the soy has been giving me a lot of problems. Because soy is in like everything or processed in a lab with everythig I need some advice.

    What’s the best gluten free soy free flour brand out there that’s safe?

    My family doesn’t believe I have these allergies either because I didn’t have them growing up. It can be very difficult at times. Any recommendations for food/snacks would be appreciated also.

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