The Lonely Life of a Food Allergy Mom

There’s one part of every kid birthday party I hate: the food part.

It’s always pizza and cake, and usually my son doesn’t care that he can’t have any. He eats his meal before the party, and I bring his dairy-free, wheat-free, egg-free, peanut-free cupcake in a little Tupperware.

But during the last party we went to, when the pizza came out and all the kids dove in, my son lowered his head, and I heard his little voice say: “I wish I could have some food.”

And my heart broke in half.

Mason is 5 years old and off-the-charts allergic to wheat, dairy, eggs, peanuts, and tree nuts. He’s had the allergies since birth, and they were diagnosed through blood testing, so he’s never actually touched any of those foods. Which means no ice cream, no peanut butter and jelly, no pizza, no mac and cheese, no milk and cookies, no pretty much any common kids’ food you can think of—ever.

He’s my eldest, so I’ve never experienced motherhood without food allergies. Which is probably for the best.

I can only imagine how nice it must be to be able to go places without a bag full of food, because you know you can always “find something.” To show up at a birthday party with nothing but your kid and your gift (and to not stay up late the night before, whipping up another batch of those dang allergy-friendly cupcakes). To send your kid to a friend’s house for a playdate without first explaining to the mom that he probably can’t eat anything in the cupboard—but like no seriously, he could die.

To send your kid to school without Epi-pens and Benadryl and an inhaler and a carefully documented, pediatrician and school nurse approved Allergy Plan, hoping to God that the teachers remember and then diligently monitor his allergies (on top of the 4 million other things they have to remember and do) and that some innocent kid doesn’t randomly offer your kid a cookie or a piece of bread.

People say that food allergies are so common these days. Everyone who hears about Mason’s allergies has a friend or a coworker or a cousin who’s dealing with them, and every teacher I talk to is “very comfortable” dealing with them.

But still, somehow, I don’t know anyone with kids dealing with multiple food allergies. There’s no one else in our family who’s had them, going as extended as you like. And every time I tell someone new about Mason’s situation, I get the same blank, confused expression—like, you’re telling me that perfectly healthy looking kid has never had a glass of milk in his life?

It’s hard for people to understand food allergies, or to take them seriously, because how could something as harmless as a glass of milk—literally every human’s first form of sustenance—be anyone’s kryptonite? How could a kid who doesn’t look sick at all be capable of violent, potentially deadly reactions to such an innocuous thing as food?

It sounds so ridiculous that it’s almost hard for me to wrap my head around it sometimes. After 5 years of extreme vigilance and only a handful of (relatively minor) blips and subsequent reactions, even we are getting a little blasé. I almost let Mason try some fries at a restaurant recently, having no idea what was in them or how they were made, because, gosh, they’re just fried potatoes and maybe it’ll be ok??

But then I hear the stories. About a teenager who died of an anaphylactic reaction to something unexpectedly cooked in peanut oil. About a boy who died after eating at a restaurant on vacation, even though the parents had done their due diligence in discussing the meal with the chef in detail. About a toddler who died after eating something she’d eaten a million times before, thanks to an undisclosed ingredient change in a packaged food, leaving a shattered mother to beat herself up forever for her tiny mistake.

It’s hard because, as horrible and inconvenient and frustrating as food allergies are, they are not cancer. They are not a heart or brain disease. They are not countless other afflictions that might be considered “worse.”

And yet, food allergies come with the same constant, looming fear: the possibility of death. It just happens to be wrapped up in a relatively-healthy-looking package, so that people have a hard time comprehending the severity of the situation or accepting that the threat is actually there. (Which, of course, compounds the danger even more.)

Mason, looking totally healthy and “normal.”

For many food allergy moms, the anxiety is crippling. I’ve read about moms who homeschool because of their kids’ allergies, and who are on anxiety meds themselves just to deal with all the fear. They don’t get babysitters, they don’t go on vacations, they don’t separate from their kids in any way—because who knows what could happen, and God forbid that thing happens when Mom and Dad aren’t there.

One of the hardest parts about the whole thing is that we don’t know what could happen with any particular exposure. Maybe nothing—but maybe everything.

In our case, my son was diagnosed when he was 6 months old and still exclusively breastfeeding, so we have never purposefully fed him any of his allergens. As a baby, he would only nurse for 5 minutes at a time, and then promptly vomit most of it up. I would literally cup both of my hands under his mouth with the burp cloth, after every feeding, and wait.

My doctor smiled and assured me that “babies spit up,” and encouraged me to keep feeding “on demand.” She even managed to explain away my poor baby’s head-to-toe eczema and unrelenting cradle cap, prescribing tub after tub of Aquafor and assuring us that it would pass.     

I was a brand new mom and didn’t know any different—I assumed this must be normal.

It wasn’t until we started introducing solid foods and Mason got some hives around his mouth after trying bananas—BANANAS—that our doctor suggested food allergy testing. On a scale of 0 to 100, with <5 being normal reactivity levels, Mason’s tests came back “>100”—literally unreadably high—for a dozen different foods.

I wasn’t devastated, only because I was too busy being relieved to have answers. Finally, I knew why this motherhood experience hadn’t so far been anything like the blissful, breezy experiences my friends seemed to be having. Finally, I could stop feeling like a crazy, paranoid first-time mom.

Finally, I knew how to take care of my own child.

Determined to keep breastfeeding, thinking that my poor allergy baby needed all of the “liquid gold” nutritional help he could get, I dropped those dozen foods overnight. For almost 6 months, until just shy of Mason’s first birthday, I lived on plain roasted turkey, gluten-free granola, a few select fruits…and not a lot else. I forgot food even tasted good—I just had to eat things, a few times a day, that wouldn’t make my baby sick.

It wasn’t hard. Really, none of the things I’ve had to do as an allergy mom have been, relatively speaking. I’m not scheduling surgeries for my son—I’m just swapping out peanut butter for sunflower butter, wheat bread for gluten-free brown rice bread, cow’s milk for coconut milk.

When it’s for your kid, and you know their health and life depend on it, you don’t really think about it—you just do it. After 5 years, I’m pretty used to dealing with food allergies, to the point where the day-to-day work (substituting ingredients, making two different dinners every day) is mostly automated, and it doesn’t take up that much space in my brain anymore.

But still: being a food allergy mom is lonely.

It’s really, really lonely.

It’s lonely being the only mom you know who has to bring cupcakes to parties and have extra meetings with teachers and nurses. Who drives 2 hours twice a year to take her son to a special allergist. Who can’t do “normal” things like swing through a drive-through for the kids’ dinner or take the kids out for ice cream or leave the house without a carefully scripted food plan.

I’m the only mom I know whose son constantly asks, “am I allergic to this?” Whose grocery bill is double what it would otherwise be, due to all the special everything-free alternatives in the cart.

It’s hard watching other moms navigate motherhood without the added stress of food allergies. (Because yes, of course I’m jealous—and of something most moms don’t even recognize as a blessing.) It’s hard swallowing all sorts of emotions when people say things like, “I’m so glad I don’t have to deal with that!”

It’s hard being different, in our society, in general. So on top of the fear of accidental exposure, there’s the fear of bullying and exclusion.

Oh, and then there’s the mom guilt. I’ve spent the past 5 years analyzing my pregnancy with Mason, and coming up empty handed. What did I do wrong? I took my prenatals, I ate relatively healthfully, I exercised, I avoided tuna and deli meat and alcohol and soft cheese.

Still, every time someone asks, “what do you think caused it?” I’m plunged right back into the guilt zone.

To date, we have no idea what causes food allergies. Some people have their beliefs—“it’s all the chemicals in our food” or “it’s that antibiotic hand soap” or “people are just too clean these days”—but my family eats real foods, we use all-natural products, and sure, I like a tidy house, but I’m definitely no clean freak. So why us? Why our son?

Our second son is allergy-free, lucky guy, and I haven’t spent a single second looking back on my pregnancy with him. And now that I’m pregnant with our third, I can only pray that she’ll come out allergy-free as well, for her sake.

But if she does end up with food allergies, at least Mason won’t be so alone.  

Because really, most days, it’s it the loneliness that’s the hardest part.

16 Responses to The Lonely Life of a Food Allergy Mom

  1. Meghan Graham June 8, 2017 at 12:56 pm #

    I love your post. We’ve met only in passing a few times. I have an 18 month old with all the same allergies, but wheat. I’ve already felt all these emotions and we have only been doing it for 9 months. I’m also pregnant with my second and wonder if we will face the same obstacles, but then think can I really have one dairy free kid and one who does consume it?

  2. Breanna (www.allergicadventures.com) June 8, 2017 at 10:36 pm #

    I can relate to so much of what you wrote! My oldest is 10 now, he has five food allergies & many environmental allergies. My other two have none. We dealt with the head-to-toe eczema, the “he’s a happy spitter, it’s okay,” the longing for answers…it’s so exhausting! & so stressful, & expensive! & unfortunately refreshing, to know we are not alone. Thank you for sharing your story!

  3. Jennifer B June 11, 2017 at 12:16 pm #

    Your blog post made my heart hurt. I am wondering if there is a food allergy support group not too far from you that you could join to meet others (in real life and not just online!) in the same situation. Have you tried contacting the folks at http://foodallergywis.org/? I remember when my son was first diagnosed, I knew no one in the same situation. The internet helped SO much, and I met many people in the same situation online, but it is so much nicer to meet in person! Wishing you all the best. Keep up the great, heartfelt writing!

  4. Melissa June 11, 2017 at 9:53 pm #

    Thank you so much for writing this. I am very new to being a food allergy mom. My youngest (1 year old daughter) was just diagnosed with egg & peanut allergies this past week and I immediately felt very overwhelmed. I also felt guilty, wondering what I did wrong during pregnancy. There is so much I need to learn & I hope it will become second nature as it clearly is for you. Thanks again for telling your story.

  5. Angela June 12, 2017 at 6:34 am #

    Thank you so much for sharing. Our allergy child is starting preschool on Wednesday and I’m literally paralyzed with anxiety thinking of it. Packing his special lunches and snacks every day. Hoping he doesn’t accidentally get exposed. Hoping he doesn’t feel left out or separated from the other children. There are certainly much worse things but I’d be lying if I said that having a child with food allergies isn’t extremely stressful and isolating.

  6. Melissa June 12, 2017 at 7:55 pm #

    I so relate to this article! My 3 year old daughter has wheat, peanut and egg allergies that we found out about after an ER trip on father’s day after letting her try french toast when she was just under a year old. Same thing with the constant throwing up after nursing and thinking she was just a happy spitter. It is tough and I still feel guilty wondering what I did to cause it since my older son has no allergies and we have no family history of food allergies. My husband and I both had bad asthma as children and a doctor explained to me once that food allergies, eczema and asthma are a triad of connected issues and they can express themselves differently in different people so for my husband and me it was asthma and for our daughter it’s food allergies and eczema. Who knows if I understood correctly or if I am explaining that right but it was a glimmer of hope for me that it wasn’t some terrible thing I did to cause it all. Keep up the good work mamas!

  7. Leah S June 17, 2017 at 10:34 am #

    I’m right there with you. My son has food allergies as well and was diagnosed when he was two. He also has asthma and eczema. It breaks my heart every time we go to a party, or there’s a school function where he can’t have the food. I hate seeing his sad face and hearing him say, “I wish I could have that food” or “I hate my food allergies.” I wish I could take them away from him and that I was the one who had them instead. And it is SO HARD when those around you just don’t/can’t understand what it’s like. I am so very grateful for the friends who try so hard to help, though. Like today, we are going to a birthday party and the mom is making all of the food nut free for my son. Just for him! It’s so amazing! When I told him he would be able to eat the cake, snacks, and candy, he was so excited. The look on his face was priceless and I will never forget it. I wish there were more people like her who understood and helped our little with food allergies. Thank you so much for sharing your heart and your story!

  8. Stephanie June 17, 2017 at 11:36 pm #

    I am pretty sure you hacked into my brain, stole my thoughts, and wrote this article. I was having a really rough being an allergy mom sucks day and I really needed to see this today. My daughter has dairy, egg, and avocado allergies for sure we are about to test peanut, some of the tree nuts, fish, and shellfish. I am so nervous. I have literally developed an anxiety disorder over it. We are homeschooling for kindergarten I just can’t with the public schools where we live feel confident she is safe. It is super lonely, I wish you lived in Georgia so we could hang out.

  9. Sanda June 17, 2017 at 11:57 pm #

    Thank you for writing this! Our daughter has a peanut allergy. Her IgE level was >100.

    I was incredibly lonely also. I was angry, isolated, and terribly sad. My relationships with friends and family were strained and our marriage was tested.

    In 2014, our then 5yo daughter started OIT (oral immunotherapy) with Dr Richard Wasserman. We drove from KS to TX for 24 consecutive visits. At the end of the gradual and steady exposure to her allergen she was able to successfully eat 24 peanuts. Her most recent bloodwork showed a significantly lower IgE level of 38.6. She still maintains a daily desensitization dose of 14 peanut m&m’s. OIT has been a game changer for our entire family. Anxiety, loneliness, isolation, etc are all gone.

    Please look at this website and possibly seek a consultation with a provider to learn more. http://www.oit101.org

    • Brittany June 20, 2017 at 7:42 am #

      Our 10 year old is also doing OIT! Her IgE is over 100 for peanuts as well, and she can now handle 8 peanuts twice per day. I cannot explain the huge weight of anxiety that has been lifted off of our shoulders after spending 9 years feeling just like this author. Sending big hugs to this mom and all of the allergy parents out there fighting to keep our kids safe!

  10. Maria June 18, 2017 at 2:23 pm #

    Kim I am living a parcel life in CT and write for Fairfield CountyMoms Blog. In fact I’ve written many posts about being an allergy mom. If you want to connect, feel free to pm me Maria ASette

  11. Casey June 18, 2017 at 8:48 pm #

    We are right there with you. Our 4 year old has a long long long list and ana food allergies. We have started to step our toes into the water of regular life = food allergies. It is scary, but we are doing pretty well so far! I found a private Montessori school that was already Peanut. Tree nut free. (I’m an educator and have fallen in love with it.) There was already several kids in the class with epic pens…hanging on the wall of the 3-5 year old classroom. Our list, the inhaler, the other medications, the risks….they listened…they were nervous, we were nervous. We decided to start half days/3 days a week. We went through the classroom and outside looking for potential problems. The decision was made to only have fruit for snack on our daughters days. We took a deep breath and lingered near by. One week down…you gave her a gummy bear? I know you read the ingredients, but no, nothing that does not come from home! Birthday parties? spontaneous? “Okay here is a stash of her goodies.” Please keep her away from the other kids and make sure they all wash their hands afterward. 5 months so far with no reactions, no breathing treatments, tons of smiles and lots of self advocacy! Oh and as for Birthday parties…we discovered a trick. We found a nut free bakery (I had no idea they existed). I then posted pictures all over fb when a family went out of their way to order a nut free, egg free, milk free, coconut free (the list goes on) cake for out little one! Now lots of friends are doing it! People care, they just don’t know to do it until they see others making it happen and the smile on our faces! Huge hugs! Oh and allergy Moms unite! Start a meet-up group if you can. We were luck enough to have a few Mom’s with older kids make it happen in our community – now it is my turn to plan the food free halloween bash and Easter egg hunt! I know it sucks, but reach out and if there isn’t a community, make one. You got this strong brave exhausted overwhelmed loving Mama!

  12. Brit June 20, 2017 at 4:55 pm #

    Wow, that was an amazing read! Thank you so much for this!!!! You seriously tugged at my heart… I really thought I was reading my own thoughts. This is me EVERY. SINGLE. DAY!! Almost to the T. My 3 year old is allergic to peanut, dairy, egg, wheat, beef, pork (cat, dog, & possible environmentals). I’ve suspected it since he was 4 months old (just breastfed) & went to many dermatologists for his skin (he also has allergies/irritations to certain products) & pediatrician/allergist appts until finally he has a reaction at 9 months old to a yogurt melt, they finally did testing. I have developed anxiety, I let no one make food for him, even having some family member watch him is hard bc they don’t get it. They think it’s “no big deal” it’s “just” food. I talk about it ALL THE TIME bc I think it helps me cope with it. We bring food everywhere for him, as well as for me now. Our second son is 7 months old and showed signs basically at birth, got tested and he’s peanut, dairy, egg, and soy so far. I’m not happy he has allergies but was almost relieved they had almost the same allergies to make it a little easier food wise in our home. Just wanted to share a little of my story to know you are NOT alone!!! I feel very lonely as well, especially now that my 3 year old is starting to realize things and asked me the other day if he could have the cake that was at the bday party we were at. But as a fellow food allergy momma, I totally feel for you and understand completely. Thanks again for sharing your story and reminding me as well I’m not the only one out there who is doing this!!! 🙂

  13. Kimberley June 20, 2017 at 5:21 pm #

    This post hit home my 1st currently 11 yrs old had a milk allergy which he out grew and an egg allergy but can handled eggs baked in breads cakes etc… we have been given the ok to try “fresh eggs” but than there’s my 2nd child she’s 9 yrs old highly allergic to wheat contact reactive and also has a dairy allergy. We learned about the dairy allergy by 3 weeks didnt learn about the wheat allergy till about 13 months when my mom gave her wheat crackers we are on a waiting list for a food challenge for the dairy allergy her last trip to the ER by ambulance was for a contact reaction to wheat she didn’t even eat anything but her gluten-free cereal bars she eats all the time a friend had eaten a wheat cereal bar and touched her they were playing around we started with benadryl but when she started having trouble breathing we used her epipen. So my oldest is scared to try “fresh eggs” since he’s seen first hand with his little sister what can happen during a severe reaction so i don’t push the issue it’s one more thing we don’t have to worry about. There school is terrible about handling food allergies and I don’t personally know anyone that handles severe allergies nor anyone that carries epipens everywhere and allergy safe foods.

  14. Melissa July 19, 2017 at 4:45 pm #

    I just wanted you to know that it does get better, and you are not alone (obviously with all the comments from other mom’s). But also that Mason is not alone. I have several severe food allergies myself (artificial sweeteners being the worst of them, and the hardest to avoid) and it’s difficult with the reading every label, knowing every name for every substance to look for (seriously one common artificial sweetener goes by 3 different names) but it does get easier. In the 30 years my family and I have been dealing with my allergies a lot has changed. And it will continue to get easier as more people are aware of allergens.

  15. Dee Kay August 20, 2017 at 7:48 pm #

    Hi Kim: We are visiting Madison next week to see my in-laws and I ran across your blog when I was googling “food allergies” and “Madison, WI”. Are there any recommendations for restaurants we can visit in the area that might be able to accommodate my oldest son’s allergies? He has significant allergies to milk, eggs, peanuts, tree nuts, sesame and shellfish. The grandparents want to go out to dinner with us and are asking for restaurant suggestions. Do you know of any that might be accommodating? We are not aware of the area and never visit restaurant generally due to his allergies. Let me know. Thanks,!!

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