I Survived a Severe Food Allergy

Dear Parents of Children with Severe Food Allergies,

Hello! My name is Meg, and I have a severe dairy allergy. I am almost 30 years old, and I am surviving and thriving in a dairy filled world each and every day. However this was only possible through constant vigilance and education about my allergy.

I am allergic to casein, the protein that binds milk together. So, no, I can’t just eat lactose-free products, or things with whey in them, or anything that contains dairy at all. And my reaction is atypical. It is more GI related than anaphylaxis, although that has started to rear its ugly head due to panic attacks/anxiety during reactions.

Here is what I have learned.

Read everything, every label, every menu item, every single time. Do not skip this step. I wish that I had followed it more often! There were many time that I was eating a familiar product, and had a reaction. Only to find out that the product had changed their formulation, and added a dairy ingredient, or a known dairy ingredient had increased its percentage in the recipe.

I’ve also missed seeing the inclusion of cheese or a creamy dressing on sandwiches or pastas, only to be unbelievably ill all night long. If I had taken those fifteen extra seconds to really read and decide on food, I could have saved myself a whole lot of grief.

I also question everything, especially at restaurants. My husband, when we were dating, would poke fun at my insistence of checking and gesturing to make sure that the server understood that no dairy can be in my food. Until he saw a reaction. Then he understood why I question the ingredients, the dressing, the garnish, and the ingredients again.

While restaurants and foods are legally required to include allergen warnings, they sometimes skate close to the edge. I’ve caught FroYo places claiming non-dairy items, even though it had trace amounts of casein and lactose. I’ve had a cream based sauce garnish loving drizzled over my fish. And my potato salad has frequently been made with sour cream instead of mayo. All without notice or warning. For those with nuts allergies, I can only imagine how challenging undisclosed ingredients are for you. And gluten! Oh boy!

It is better now than it was when I was a child. I drank soy baby formula until I was ten. Ten. There was no soy milk, soy yogurt, or non-dairy ice cream available at regular supermarkets for a reasonable price. For those of us who grew up before Whole Foods, before allergen labeling, before the gluten-free/dairy-free fad diets, it was tough. Literally, nothing was safe. And so I learned to read the labels on everything, every time.

So please, count your very lucky stars that there is so much available to you and your child today. Going dairy free, nut free, gluten free, whatever free is relatively easy. However, even with all of the resources available today, it is still hard to navigate an allergen-filled world. Allergens can be picked up through skin contact, through traces on doorknobs and monkey bars. For the very allergic, this can be deadly and all the allergen-free items in the world will not make this untrue.

So, parents of children with severe food allergies, get those epi pens, read those labels, and shop wisely. Teach your kids to question everything that is in their food, to trust their guts, and not take chances with their allergy. Spread the word about hand washing all the time to your friends and their children. Educate your teachers, school administration, and school health care professionals.

Treat your precious child just like every other child. Don’t hover too much, don’t butt in too often. be watchful, but let your child be a child. They, and the money you won’t spend on therapy later in life, will thank you.

Love,

Meg