Last week, my chromosomally-gifted daughter was diagnosed with celiac disease.
Let me insert this appeal up front: We’re getting tons of advice from all quarters, so please don’t fill up the combox with that; I can’t process it all anyway. I have to learn things bit by bit. That was true when she was born and it’s true now. This post is not about that.
With that out of the way…
Eight weeks or so ago, I posted about our forty-seven medical appointments since April. Now we’re up around sixty.
It’s been an intense year, to say the least, and there’s nothing quite like getting a phone call from a GI specialist at 6:15 the night before Thanksgiving, telling you that you officially have a developmentally disabled child who needs to be totally gluten-free for the rest of her life. Did I mention it was THE NIGHT BEFORE THANKSGIVING?
It’s been a trying fall, with this on the radar. She has no symptoms whatsoever, and in fact, her brother’s nickname for her is “Pasta Noob” because pasta is her favorite food. We only found out because in August they did a blood workup that is standard for people with Down syndrome. Thyroid was fine, but the indicator for celiac was the highest the doctor had ever seen. So high, we had great skepticism that it could possibly be an accurate result.
For three months, then, we’ve had this gluten-free thing on our radar, while being told not to change anything, lest we skew the results of the endoscopy.
Advice or not, we’d already been skewing more toward gluten-free in the household, and when they redid the bloodwork the day of the endoscopy, her number had been cut by 2/3—though it’s still so high it seems like it’s on a different scale altogether.
But still, I had a full-on meltdown last week. My choices are to make the whole family go gluten free (healthy, obviously, but also a total nonstarter) or to prepare double meals. And leftovers are a staple in our house, which makes storage a Thing. And cross-contamination. Holy cow. I’m looking around my kitchen and thinking how much work this is. And Communion! That’s a whole other can of worms.
My daughter also had a meltdown. At her teacher’s recommendation, we sat down with her and made a list of all the foods she can still eat, then made a list of foods we have to find substitutes for. Of course, she still scavenged Oreos while we weren’t looking.
I am grateful for my family, who went out of their way to make sure the Thanksgiving meal would not exclude my daughter. We had gluten-free rolls, gluten-free green bean casserole, and gluten-free stuffing, and I made my first foray into gluten-free baking with one pumpkin pie crust. Of course, the dog ate over 3/4 of that pie while we weren’t looking. But you know. I shouldn’t have left the pie carrier unzipped on the deck.
Most striking in all this is how my own attitude and behaviors are shifting. I am a gluten girl. All those bready starches are my downfall and my joy. But when I’m with her, I’m finding myself perfectly willing to abstain from restaurants and foods that she can’t have, out of solidarity. I went without bread at a friendsgiving last week so she wouldn’t have to do it alone.
And so it goes. I’m struggling for a neat and tidy bow to wrap up this bloggy package, which I suppose is appropriate, given that this is among the messiest things I’ve had to deal with. Like Bilbo Baggins, I’ve been sent on a journey I didn’t want. I’ll just have to trust that the end point is as worthwhile as his.