Of all the things I’ve given my kids genetically, food allergies is the thing I most wish I could take back.  I never thought that of all the differences that my girls could be negatively impacted by that food allergies would be the worst offender.  I would eat only celery for the rest of my life if it meant my kids could be like everyone else and eat whatever they wanted.

My daughter has never known a time when she could eat whatever she wanted.  She was 18 months old when we discovered her gluten allergy, as a direct result of my own discovery.  As an infant she had horrible eczema that didn’t heal with prescription creams and that she would scratch until it bled.  Our doctor was convinced it was something she was eating, but we could never figure out what it was.  She also almost always had a cough that never got any worse and never got any better.

Looking back now, I regret the decision to not get her tested for celiac disease, as knowing definitively that’s what we both have might be helpful.  However, when you realize the food you are eating and feeding your child is making you both sick you eliminate the food as quickly as possible.  Keeping my daughter and myself sick so that we could get a proper diagnosis didn’t make a whole lot of sense to me.

Years later while the eczema is mostly gone we still deal with asthma (that ended her up in the ER) and almost daily complaints of stomach-aches.  These issues are most likely directly related to lingering issues with gluten and other yet to be diagnosed food allergies.  I feel like we are permanent illness detectives and on high alert for everything our kids put in their mouths.

I want you to know that my daughter knows she’s different.  While she understands that gluten will make her sick I worry that she will soon be at the age where she wants to test that theory just to see what would happen.  Six years into this illness I’ve had plenty of accidental exposures and I know that what would happen would not be good.

I want you to know that she is frustrated that she can’t buy school lunch.  As a mom, I’m frustrated that there are no safe gluten-free lunch options provided by my school district.  Which makes me grateful that we don’t need to access the Free and Reduced Lunch program, because my kid would have no choices.  I know that she looks longingly at things like french toast sticks and pizza dippers and feels left out.

I want you to know that I read every single food label every single time.  Even on the foods that we eat regularly because ingredients change. I also want you to know that just because something is labeled gluten-free doesn’t make it so.  The big push to make Cheerios gluten-free has ended in disaster and made members of my family sick.  This makes me a hypervigilant mom. As an educator I’ve seen other celiac parents labeled as “helicopter parents” for their focus on food safety.  Like making sure your kid stays safe at school is a bad thing. Why is it OK for parents of kids with anaphylactic food allergies to be vigilant but not for me?  While exposure to gluten won’t kill my kid instantly it will have permanent long-term impacts on her overall health for the rest of her life.  A fact we are learning first hand as my husband deals with some medical problems that could be due in part to long-term exposure to food allergens.

I want you to know that my daughter will happily bring her lunch box with a cupcake and a slice of gluten-free pizza to a birthday party so she can be a part of the festivities but that the one time a friend made sure to have gluten-free pizza and cupcakes (for everybody) at her party and happily yelled “everything is safe for you to eat, you didn’t have to bring your bag!” I cried in the car on my way home.

I want you to know that planning activities around food automatically excludes her because she can’t participate fully.  Sure, an alternate food or activity is fine, but she knows it’s not the same.  She understands at her level that separate but equal is not equal and it upsets her and as a result it upsets me.

I want you to know that in this day there is no longer an excuse for not understanding food allergies.  Researchers estimate that up to 15 million Americans have food allergies. This potentially deadly disease affects 1 in every 13 children (under 18 years of age) in the U.S. That’s roughly two in every classroom. source  Chances are good that your child has a friend or classmate with a food allergy. As a kid, as a person, all my daughter wants is some compassion and understanding.  That’s all I want for her as a mom too.

I want you to know that as a food allergy mom I will continue to fight tooth and nail for my kids.  I will continue to educate them and others on food safety and exposure.  I will continue to be “that mom”.  I’m guessing if you were in my shoes, you would too.

For more information on food allergies and celiac disease please use the following links:

FARE (Food Allergy Research and Education)

National Institute of Allergy and Infectious Diseases

FAACT (Food Allergy and Anaphylaxis Connection Team)

Celiac Disease Foundation

Beyond Celiac