Food allergy awareness month and celiac awareness month, both in May, are now coming to a close. As many of you know, not only did our entire family move to a gluten free diet, but I also made a big mistake last week that led to a serious anaphylactic reaction. It’s been a very overwhelming four weeks and while I had hoped to share great educational articles and stories this month, I shifted into survival mode and never got it done. It happens, I know. I am trying to provide myself grace and patience as I continue to lead our family’s special diet life.
Many friends and family members alike have said they feel helpless and don’t know how to support our family. It got me to thinking, what would I really love for you to know about food allergy and celiac life?
It didn't take long to come up with a list:
1. Never question a child when he or she says they cannot eat something: Ethan, and now his siblings, are superheroes in training, learning how to stay safe and healthy. If they say no, it’s a wonderful moment of self-protection. Instead of questioning them or giving them a guilt trip, consider telling them how proud they should be of themselves.
2. Teach your kids that inclusivity of allergy or any special diet is just as important as that of other disabilities: While not every country formally lists celiac and allergy as a registered disability, they can be both life threatening and debilitating at times. The best way to support my kids is to teach yours all about their conditions.
3. When you see someone reading a label, don't get mad. They are doing it for a reason: I’ve heard people I love complain about ‘that person’ at the grocery store, standing in the aisle taking forever to look at products and read boxes, touching many items at a time. Trust me when I say, this is me. And this is how food allergy and celiac parents keep their kids safe. We aren’t trying to get in the way or be annoying, just literally trying to keep our kids safe.
4. When a parent or caregiver requests more information about a party or gathering - be that food, art supplies, etc - know that they understand the burden this creates: It’s honestly horrible to have to ask all the time. I know it may be A LOT for some people. But I appreciate you taking the time to do so, and I am full prepared to provide substitutions so my child can participate fully in all activities.
5. Take the allergy aware training course! It could save a life: It’s free and it’s available for absolutely everyone to take – www.allergyaware.ca
6. If you work in a restaurant or own a small food shop, listen to your guests when they ask questions, and be honest in your responses: People who ask these questions aren't trying to make your life hard. They just want to enjoy a meal safely. And they are probably more stressed about the meal than you are, so you already have something in common.
7. Substitutions mean the world to food allergy and celiac families: When the school allowed me to provide my son a freezie on ice cream day at school, my son was happy, but embarrassed that he stood out and was ‘different’ than his friends. When my daughter saw a ‘free from top 8 allergens’ product in the school snack bin, available to ALL children, she felt normal and safe and included. Anytime you can include a safe substitution and offer it to the entire group, you’ve provided an inclusive environment for all.
8. When people ask to read the labels even though you feel it's safe, please let them: Don’t take it personally when a food allergy or celiac family asks to peek. It's hard to trust others, most parents don’t even trust themselves. Sometimes people miss things, and allergens can be disclosed under many names. Have the labels ready and you’ll relieve so much stress.
9. Consider asking a food allergy or celiac family, ‘what can I do to make you feel safe in our home/at our event?’: This will make them cry. I guarantee it. People who do this are angels in our books and make us feel included and safe.
10. An episode of anaphylaxis is a trauma: Please be patient as a family recovers from the very scary experience of sudden, severe illness. We might not want to talk about it, or overshare. We might be afraid to leave home, not want to try new things, or just seem quiet. It takes time to decompress, please don’t take it personally.
11. Don't take offense if a food allergy or celiac child doesn't wish to touch the same thing as you: In my experience, my food allergy child is often worried about what you touched before that moment. He is on alert, 24/7. Right or wrong, he’s just trying to stay safe.
12. Food allergy and celiac families may not wish to eat out: It is really hard, every time. While we don’t want to hurt your feelings, please know we may decline your offer because it’s too overwhelming.
13. Normalize washing hands before AND after your child eats: This is such an easy way to help keep others safe! What seems like crumbs or greasy fingers to you, scares the pants off food allergy and celiac families. Hand washing goes a very long way in keeping others safe.
14. Please don't bring snacks to public playgrounds and play centres: How long are you really there? Do you really need more than water for thirst? If so, please have them sit and eat, then wash up before play. Goldfish, trail mix, cookies and yogurt drinks can honestly make a child so, so sick, and if there is nowhere to properly wash hands with soap and water, you may leave residue and crumbs that lead to an ambulance ride for another family.
15. Finally, sanitizer is not enough to remove allergens from your child’s hands: It’s good, especially during this crazy COVID time, but soap and water (and a long scrub) is the only guaranteed way to remove allergens from hands and face.
If you’ve stuck through this post, I am grateful <3 <3 <3
I hope you’ve learned something new, and maybe one of these suggestions is something you are willing to implement moving forward. Food allergy and celiac life can be overwhelming for parents, but thanks to our amazing support network we know we can be safe and healthy.