Back to School: A Letter From a Mom to a Daughter with Celiac

back to school with celiac

When I was kid, oh how I hated September. It meant my summer at Long Beach Island was coming to a close. It meant shorter days. It meant cooler nights. And it meant…EGADS…back to school!!

I wish I could say I had pleasant memories of my school years. But between you and I, I pretty much detested it; from grade school, where I got bullied, all the way through college, where I never found my footing.

I know it’s important. I just wished I enjoyed it more.

Into my adult years, the end of the summer didn’t seem so bad. Sure, the weather was turning. But football season was kicking off. The Dudettes would be back to some kind of routine, and as someone who works in a home office, I’d get my space back a bit. And now, well, we have The Walking Dead beginning in 5 weeks. Who’s to complain?

But I didn’t deal with celiac as a child. And I don’t have a child with celiac. And I know back to school can mean something totally different for people in those shoes. I could give my thoughts on it, but instead I’d like to share a letter a mom privately shared with me (and gave me permission to share with you). That adorable little girl in the school bus above is a fellow celiac and here are her mom’s words as she sends her off to school.

Mom…take it away.

It is that time of the year, again. That time when most moms and dads are thinking of school supplies, uniforms, bus rides, teachers, classmates, lunch menus and, in three words, everything related to “Back to school”. For me, my husband, our daughter and all the families out there with children with CD these three words have another meaning: FEAR.

It’s that time of the year when we wake up in the middle of the night thinking: will our daughter’s 3rd grade teacher understand the meaning of CD? Will she/he be supportive and understanding? Will she/he talk about allergies and diseases with her/his class? Will she/he notice when and if our daughter gets glutened? Will she/he even consider extra TLC for our precious girl if this happens? Is the school cafeteria going to be a gluten nest with all the possible scenarios for cross contamination? Will our daughter’s friends and classmates be thoughtful on what they eat and how the eat it around her? Will her classmates’ parents be thoughtful, careful and understanding when sending snacks to the classrooms?

The only right answer is and always will be: MAYBE.

I am not going to lie. Our daughter has attended the same public school for the past 3 years and the teachers have all been very supportive and understanding. Our daughter has been exposed to gluten in many ways and forms on a daily basis, reason why feeling that fear in the bottom of our hearts will never disappear. But one thing for sure has changed. Our daughter’s sense of responsibility and understanding of her CD.

She, by the way, at only 8 years of age has asked me to PLEASE not use the word DISEASE when we try to explain to the rest of the world what she cannot eat, since she doesn’t see it as a disease. And she’s 100% right. She can get sick if she ingests gluten. She can get sick if she’s not careful with CC. She can get sick if she doesn’t ALWAYS read labels and ingredients’ lists. She can get sick if she doesn’t wash her hands before and after eating anywhere.

Other than that, as hard as sometimes can be in a world packed with products with gluten, she’s a happy, healthy, sweet and smart girl, living her life at the fullest, avoiding the big G in her life. Gluten.

She has learned to live with the always hard:

– “sorry, you can’t have that because it has gluten in it”
– “sorry, you can’t eat that because we are not sure of the ingredients”
– “sorry you can’t eat that because it may have been exposed to cc” scenarios

And, yes, it will always be hard. It is actually TOUGH.

But she has taught me a valuable lesson: as a mom I will always live with fear of seeing my precious daughter get sick, but she has taught me also to live with HOPE. 10 years ago there were very little certified GF items. We still have a long way to go with the food industry but we have come a long way too. 10 years ago Celiac Disease and Gluten were almost never mentioned. Almost like they were non-existent. Now, the word is out, people are being diagnosed on a daily basis and we THE CELIAC COMMUNITY are all responsible for sticking together and raising awareness.

So let’s learn from our little celiac warriors and wish them luck this school year!

To our precious girl, we love you to the moon and back. We are and will always be here for you. We will walk this journey with you. Keep going STRONG and confident. Go ROCK that 3d grade and go kick that big G in the butt!

Love always,

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4 thoughts on “Back to School: A Letter From a Mom to a Daughter with Celiac”

  1. Mom

    All my best to you, Dad & your beautiful, intelligent 3rd grader! Sounds like she’ll be just fine with you watching her back!

    My baby girl (newly married & 22 but always still my baby girl) left last night, after 5 weather delays & a plane change for mechanical problems, for her first week long meeting with her new international employer. As a result of the delays, there was no guarantee she’d make her connection to her final destination. This old Dad could only imagine my 8 yr old baby sitting by herself at a huge airport gate at 2 am waiting for the 1st flight out at 6 am. I had to put the FEAR out of my heart and mind and trust she was prepared and would make great decisions as she has always done.

    Our parental FEARS only change shapes and circumstances, but our beautiful, intelligent daughters conquer every test as they progress. My baby girl made her last connection & safely into her hotel room early this morning many miles farther away than I can hop in the car and go help her. At 5:30 am, my best golf buddy emailed to me pictures of his new grandbaby girl, which his baby girl had just delivered into this world.

    Mom, I know you & your baby girl will ROCK the Third Grade! As tough as big bad gluten is on me and your baby girl, gluten fears, when properly organized and faced , pale into subdued comparison with empty international airports at 2:00 am and knucklehead (just kidding…) sons-in-law.

    All my best wishes for you & your beautiful daughter for a safe and healthy 2015/16 school year!

  2. Thank you for this post! I will print it for MY 3rd grade daughter with celiac disease who starts school in two days. Meeting with her teacher and new principal tomorrow.

    Every word you wrote was as if I had written it. The same fears, the same responses, the same love for our daughters.

    And yes… let’s kick G’s butt this year!

  3. What a great story!
    AND so true. Fear is always present when we choose to OR are forced to eat anything that someone else prepared. We always have to wonder if they really get it. Do they understand how sick a Celiac gets from even the unseen tiny amounts of gluten?
    While I appreciate the optimism of an 8 year old in not wanting to face the fact that Celiac is a disease, it is true that “we THE CELIAC COMMUNITY are all responsible for sticking together and raising awareness.” Part of that is accepting that it IS a disease in every sense of the word DIS-EASE. Using the wrong terms does little to help us face the reality. Pretending that it is merely a “life style choice” implies that we have a choice to eat gluten. In this crazy world where chefs actually fed people dangerous foods ON PURPOSE, every single one of us has the responsibility to accept that having any disease carries honor and purpose in this life.

    We have only language to communicate with others and help them to understand. Sometimes we have to accept a label for ourselves to understand our place in this world first. Then we can facilitate cooperation among peoples with different needs and be an agent for change for everyone who suffers with any disease.

  4. Hey GD!

    Purchased some chocolate covered toffee made by Enstrom’s out of Colorado from local CostCo. It is marked ” Certified Gluten Free” but later says something akin to ” made at a plant that processes nuts,flour etc” How can the two exist together?


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Who I am. And who I'm not.

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I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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