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There is no doubt about it; being a parent to any child involves a steep learning curve. But when your child is facing allergies, a life-threatening condition that impacts 1 in 13 US children, it can seem like there is just that much more you need to learn. What questions to ask when you call a company, how to read labels, how to communicate with those around you about safety concerns, how to administer epinephrine, what the signs of anaphylaxis are, and so on.
In honor of Food Allergy Awareness Week, I’ve compiled a list of five things I’ve learned as a food allergy parent. There are, of course, many other things I could add. For the sake of time, however, I decided to limit this post to just five.
1.Some people will think you are overdramatic. You can’t change that.
“You are so overbearing”. “Loosen up”. “It isn’t that big of a deal”. “They can have just a little”. “It is ridiculous to have a nut free lunch room; those overbearing allergy parents only think of themselves”. I could go on (and on, and on….) about the minimizing things food allergy parents hear. But the reality of the situation is, no one wants to join this club. We are fighting every day for our children’s lives. We aren’t being overdramatic. All food allergies are life threatening. Not everyone will understand that though, no matter how much evidence they are presented with. Sometimes, for your own sanity, you just need to accept you won’t change their mind. You already have enough to worry about trying to keep your child alive. If someone doesn’t want to believe food allergies are serious, I’ve learned to walk away. Sometimes it requires not having those individuals in my child’s life, either. It is unfortunate, but if someone believes that I am being overdramatic because I want to protect my child? They don’t deserve a relationship with me or my little one.
2.It is a major adjustment after diagnosis, but it gets more manageable.
When I learned my child had a sesame allergy (on top of a tree nut allergy), I felt lost. What could I do to keep them safe? What foods were sesame free? What lifestyle changes would we have to make? But over time, I learned the right questions to ask, what our safe products are, where our safe restaurants are, how to pack a bag to keep my little one safe while we are away from home, and what we need to be wary of. I won’t say managing food allergies ever gets easy. It doesn’t. But it does become more manageable as you find support and learn how to live with the condition. My allergy resource portal has a list of websites, downloads, products, and Facebook support groups that can help you get started if your child is newly diagnosed or you just need some direction.
3.Reading labels isn’t enough. There are tons of loopholes in labeling laws that allow for allergens to sneak their way into products.
I will have to do another post on this, but let’s put it this way. The only food ingredients manufactures are mandated to explicitly label on the product are those within the Top (or Big) 8*, or that are primary ingredients. Natural flavors, spices, and other terms can be used to hide any number of ingredients in a product. Additionally, there is no obligation for manufacturers to label if a food product has shared lines or facilities with any allergen (Top 8 or otherwise). This in turn means allergen proteins could be in a food item due to cross contact, even if the product doesn’t say so. Oh, and “peanut” or “nut” free just means there are no nuts in the recipe, not that the product is nut allergy safe! So no, reading labels isn’t enough, especially if you are managing an allergy outside the Top 8.
You can learn more about how to read a food label for allergies here.
4.Lots of people confuse intolerances and true allergies.
You can read more about one encounter we had with this misconception here. Ultimately, if you have a true allergy, you run the risk of a life-threatening reaction any time you come into contact with that food’s protein (regardless of reaction history). In contrast, while intolerances are uncomfortable and may be severe, they are not life threatening. Those with intolerances may be able to ingest small amounts of a trigger food without subjecting themselves to danger or discomfort. If someone tells you they have a food allergy, never assume they can have any of their allergen, or anything that has come into contact with their allergen. It could cost them their life.
Read more about the difference between food allergies and intolerances, and get answers to other frequently asked questions related to food allergies here.
5.You are your child’s advocate and it is perfectly acceptable to speak up. This is life or death.
My child can’t advocate for themselves yet. Because food allergies are a life-threatening condition, I need to be their voice until they can speak for themselves. Their life depends on it. Sometimes this means I look like the bad guy, especially when someone insists my child should or can ingest or come into contact with something that would be dangerous. You have a right to stand up for your child when others are not acting in their best interest. Whether that person is a family member, friend, teacher, or another caregiver doesn’t matter. It is absolutely acceptable to speak up on your child’s behalf.
As I noted earlier, this list is far from exhaustive. Furthermore, I continue to learn more the longer we are managing food allergies. But these five things are major lessons I’ve learned during the time we’ve been managing food allergies.
What is something you would add to this list?
*Top 8 Allergens: Milk, egg, peanut, tree nuts, wheat, soy, fish and crustacean shellfish