Our Celiac Journey Begins Miraculously

I was floored. My three-year-old’s pediatrician was calling to tell me she had “some celiac”.

As it turns out, you cannot have “some celiac” and my daughter’s levels were through the roof on every test. Maybe the doc was trying to soften the blow. Nevertheless, it was a stunning blow.

Here we stood at the beginning of a journey that will last my daughter’s entire life. Somehow, I had joined the ranks of the “allergy moms”, while somehow simultaneously understanding the “rebel mom” who broke school policy and sent birthday cupcakes to kindergarten this week.

Amazingly, it was a serendipitous stomach virus that led to Miss E’s diagnosis. After spending much of the night saying, “Owie! Owie!”, we went to the pediatrician to rule out something serious, like appendicitis.

I half-jokingly mentioned that my husband thinks it’s celiac disease, as she complained her tummy hurt while eating toast. Her doctor that morning turned out to be a gluten-sensitive pediatrician, who normally works at a different office. She ordered the celiac panel which thankfully led to an unexpected diagnosis.

Thankfully??? Yes, I am thankful. While celiac disease has upturned our loves, I have reasons to be thankful:

1. the miraculous coming together of events that led to a diagnosis,
2. an early diagnosis in my little girl, who with the benefit of hindsight had very mild symptoms, which could have been overlooked for decades,
3. the amazing amount of information and gluten-free products available today that we would not have had a decade ago,
4. and that celiac is a disease fully treatable by diet.

In the first days after that call, I researched celiac nonstop. My husband did not appreciate the hours after midnight when the glow of my phone emanated from under our covers, as I tried not to disturb him with my new obsession. Sure, there’s gluten in pasta and bread, which the Italian side of me knows are the best foods ever. I didn’t know of the dangers lurking in soy sauce, my toaster, and play-doh. At three, play-doh is an important part of Miss E’s life. I will share more resources along the way, but the one that got me off to a running start was celiac.org.

I downloaded the Find Me Gluten Free app and researched places to eat out safely. Although we do still eat out, we do it a bit less than before (which was WAY too much).

I’m now focused on gluten crumbs and invisible gluten on colanders previously used for wheat pasta.

With a desire to stay positive for my daughter, I focus on all of the money we’ll save eating out… or at least all the money I can now spend on teeny tiny $7 loaves of bread and gluten-free goodies at Whole Foods. Did I mention those $7 loaves have giant holes in them?

So I console myself again, at least we’re eating out less. We’ll save money and be healthier. Then, I remember all of the gluten-free cookies we’ve been taste-testing. Oh, well!

Miss E was diagnosed in November, so I quickly took on our first gluten-free Thanksgiving.

This was followed by building our annual gingerbread house, searching for gluten-free lipgloss for her first ballet recital, hosting all Christmas meals for friends and family, and making our traditional Christmas morning crepes, which were yum!

Each of these once simple tasks has been a challenge. Still, I am determined to jump headfirst into our gluten-free life without missing any of the fun we used to have.

Many celiacs with decades of experience have paved the way for my family to do just that. If I can make the bumpy road to gluten-free a bit easier for your family, I will have simply paid it forward.

Update: Little did I know when I wrote this blog post that my own celiac disease diagnosis was just around the corner.