We live with Food Allergies

5 Tips from our Allergy Story

Here are five tips, tricks and stories and might help you or a loved one living with food allergies. Any ‘advice’ is based on my own experience with food allergies in our family and should be taken with a grain of salt. This is in no way meant to replace or contradict what your medical professionals tell you, it’s just what happened in our home. My hope is that these stories might help you too.

1) The shock of the diagnosis

It’s happened several times to me. With each child and with each new allergy. I’ve gotten a diagnosis I didn’t like and then I had a hard time. Surprisingly, at least to me, I had the most difficulty with getting used to ‘living’ everyday with that new reality. I had trouble assimilating the new allergy into my everyday concept of how the world functions.

In the doctor’s office, you hear them tell you “the results are positive for (insert food here)” and your heart stops for a second. Your head spins and all you want to do is run. Well, that’s how I felt. Since this has happened more times than I’d like to count, I’ve tried different reactions on for size. One time I asked a lot of questions. One time I sat stoically and nodded. This last time I got out as fast as I could and cried with my baby in the car.

Before and After

My mothering world is divided into before and after we had to live with food allergies.

I really do miss the first few times I fed my daughter solid food some 10 years ago. I don’t miss the experience so much as I miss the woman that I was then. I was clueless. I was doing my best. I was following all the rules laid out by the pediatrician and government approved parenting books. I thought food-allergies wouldn’t be a part of our experience because we have no history of them in our family. I was free from worry.

With allergies in the family, it is the constant worry that tires you out. That anxiety makes you seem over-protective to the outside observer, and it sometimes makes you tense. It has even made me a little reclusive sometimes.

Worry and Anxiety

What no one tells you about a family living with food allergies is that once upon a time they didn’t have to worry. The parents remember a time when the sword of Damocles wasn’t there, waiting to strike. In most families, at least one parent is allergy-free and they remember not having to obsessively read food-labels, skip out on food-related activities when in doubt, and avoid all food in a buffet-style atmosphere.

This is the part of the story no one tells you. This is the thing that makes all of this so hard. It’s this memory of not having to do any of this that reminds you of an easier more care free life. It haunts you and nothing the doctor tells you prepares you for it (although I wish they had tried to tell me something comforting).

I wish the medical professionals we encountered would have at least warned us of this reality. Hearing “it’s going to be hard, but its going to be okay” would have been a sanity-saving statement. I would have been somewhat prepared. I would have felt like I was not alone in my panic, like others found this hard too. I would have felt less paranoid, less alone.

2) Shift your perspective

“Okay,” I thought, “he’ll be a meat and potatoes kind of guy. We’ll be okay. Most of Texas and Alberta eats this way; he’ll be just fine.” This is what went through my head after months of struggling with the idea that my little one’s food allergies crossed several foods off the list.

When I realized that for the foreseeable future, my baby was going to have to live without wheat or fish (two staples in our house), I was scared for him. How would he be able live without traditional Italian bread, pasta, pizza, panetone, biscotti etc.?

To survive in the present, we learned all about wheat-free cooking. Its been an adventure and a fun culinary experience overall. Who knew Teff flour could be so good for you and be so tasty?!! Nonetheless, it was hard to get used to at first. For me, the hardest part was knowing what he was missing out on. Then I shifted my perspective and it saved me.

I focused on all the people that eat a simple diet and do just fine. I remembered that other families eat differently and that food doesn’t have to be at the center of our enjoyment. It was a difficult thing to wrap my heart around, but when I felt it was going to be okay, I started to breath deeply again. “He’ll just be a meat and potatoes kind of guy.” That thought saved me. If you’re struggling with acceptance, try to re-frame your thinking. Replace “she’ll miss out on most Asian cuisine with this sesame allergy” with “if she wants to have (insert whatever dish you want here), she’ll just have to learn to make it herself. It’ll make her an adventurous home-chef.”

3) When in doubt, make it yourself

Never did cake make me so nervous!! Food allergies and sweets usually don’t mix. At least in my house its been a challenge. My advice to my younger self: Don’t stress, just make simple foods yourself. Don’t overthink. ‘Keep it cupcake’ and as colorful as possible. Make sprinkles your friend and keep the cake batter as simple as can be.

School Friends and Parties

With school, came birthday party invitations. It was difficult at first, but now I just send my kids to the party with a tray of lovely cupcakes or some other fun desert to share. The parents rarely object, the kids are mostly enthusiastic about more sweets. Be forewarned though, there might be one or two children that get jealous and misinterpret the gesture as a grab for special attention.

Our food-allergy journey began with an egg intolerance, so the first foods I had to modify were deserts. Making everything myself, out of necessity, got my daughter used to homemade. This is positive, I think, and means she is less likely to binge on unhealthy processed foods later on in life.

4) Find or create a community

Find people, talk to them, seek them out. Read books, but then find the authors online and start a conversation. Tell your story and share. You’ll feel better. I know you don’t believe me, especially if you’re an introvert like me, but do it and you’ll see it will make all the difference. I’m in the process of trying to get our local government to help families in the community. It’s important to reach out.

Get the Kids Involved

A great way to get your children involved is to have them help you with a simple fund-raising activity. My daughter and I made Rainbow Loom charms to sell to people we knew. We donated a few hundred dollars to a local hospital to help fund their ground-breaking research. It was an empowering experience. Knowing we were part of a future solution made all the difference to our experience that year.

5) Breathe, go for a walk, give yourself some down time

It will be okay. Tomorrow will come. Humans adapt and grow like no other species. You are resilient and your family will get through. If you’re in the middle of a struggle that has to do with food allergies, the only advice I have is this: give yourself some breathing room. Allow for frustration, yours and theirs. Allow yourself some time to think, to cook new things, to experiment and embrace the adventure.

Other people

Know that people in your extended circle of family and friends won’t always understand, won’t make it easier and will sometimes judge you and your children for something that is out of your control. Breathe through it. Let people’s opinions fall away as best you can. All I can do is remove some of the shock I experienced in the face of ignorance. It will happen. People will be cruel, thoughtless, and selfish. They might even compare some small food issue they’re having with the immensity of your everyday struggle. Try to take it in stride. Let the small stuff go, for your own sake. Avoid the people that are not making an effort. Love is sacrifice. If they cared for you, they’d try in concrete ways to lighten your load.

I don’t expect anyone to throw out the flour in their home, but they can avoid leaving nuts around. They can avoid serving food as a main course that my kids can’t eat. They can make a boxed cake from the gluten free section (which does cost a little more) instead of the regular stuff. I’d rather a boxed cake that everyone can eat, then a fancy desert my family can’t enjoy.

Don’t get me wrong, it’s not because we need desert, or pizza, or anything else for that matter. It’s more about what we don’t need more of. I don’t need the stress of explaining to the baby why he can’t eat something. I don’t need to worry about whether the other children washed their hands after eating something that somebody else is allergic to. We just don’t need extra complications. To add to our struggle, is to be unkind. Be aware that these things will happen and although I can’t prevent that, I can warn you.

Some stories to share

Let me share some stories with you. These are not meant to shame anyone or make anyone feel badly. They are, however, the kinds of stories that early on would have helped me know what to expect had I been savvy enough to look for support online. In general, when people mess up, they do so out of ignorance, so try not to take it personally. I do suggest that you avoid spending excessive time with the people who are not showing you care and kindness. Not to punish them, but to preserve your energy and keep you focused on what you need to do.

For the most part, our family has been great, providing alternate foods, several main courses, different deserts. Nonna always has three meals going at once and vanilla ice-cream for everyone. Zia always has chips, cucumber slices and olives at the ready when we’re in a pinch for a treat that everyone can eat. We make it work, but it isn’t that way at every party or every gathering.

I’ll never forget being at a close relative’s home for a birthday party. My then almost four year-old couldn’t eat eggs. I brought a store bought egg-free muffin for her to enjoy at desert time (which was a back-up but shouldn’t have been necessary). When confronted with a sweet table full, and I mean full, of several types of cookies, a huge Cake-Boss style cake and several smaller cakes, she looked at her muffin and pushed it back it me. She didn’t say a word, she just refused to eat it. Had they also offered her and others an ice-cream cone, it would have been a completely different experience.

At a cocktail-style wedding nothing was fit for my kids to eat. Everything had mayonnaise in it, go figure. We were not able to eat at all and we all went out to dinner after the party.

Another time, at a close relative’s wedding, none of the ‘kiddie’ food we were served was food my little one could eat. Italian weddings have several courses, and all she could eat were the french fries and some salad. For desert, my husband brought her across the street to a local restaurant chain to have ice-cream, because she couldn’t eat what was served to her at the party.

Let me be clear. This is not about being slighted or feeling like others need to always go the extra mile when they have their own lives to lead. It is about feeling cared for. It is about making an effort and noticing when someone is being left out. It’s letting go of something pre-set, in favor of widening your embrace to include the little ones in your life that often feel left out. It is about noticing that the mother and father of said little ones are exhausted and might need someone to lift their burden by not adding to it.

At my own wedding, I had a special platter made for a guest that hadn’t told me he was vegetarian. When we saw he wasn’t eating, we asked if everything was okay. Two minutes later, my husband was whispering something to the waiter and ten minutes later the out-of-town guest had a platter of grilled veggies to feast on. The look on his face was worth it. He felt cared for. He thanked us profusely. I now know what that meant to him because I felt the same way when my aunt baked a tiered rice-flour carrot cake for my baby so he could have desert at her grand-daughter’s birthday party. I felt cared for. We felt loved.

Another time, acquaintances took the egg-intolerance as a culinary challenge and learned how to use bean-puree to replace mayonnaise, baked without eggs and tried several new recipes just for us. The woman thanked me for giving her the opportunity to learn how to cook in new ways. I was floored by the generosity of that gesture. We felt cared for and appreciated.

It won’t always be the case. People will disappoint you with their carelessness. Chalk it up to their being human, but be around them less if it brings you down. Save your energy for the day-to-day struggle. You’ll need it.

The Best Advice

When you’re feeling overwhelmed, give yourself some time to be still, the rest won’t seem as hard to handle. I walk, crochet, knit, scrapbook, cook, pray, read and binge watch my favourite TV series from Italy. These things get me through the rough spots, quiet my worry and blot out the anxiety. I’m going to add Pilates to the things I do to take time for myself. Exercise helps.

What do you do to get you through the hard times with allergies in the family? Leave any tips and advice in the comments section. I’d love to learn what works for you.