The Celiac Report, Week 9… plus related updates on my daughter

We’re 9 weeks into the celiac journey with our daughter. My past celiac reports have resembled diatribes more than anything, so I thought I’d do something different this time. Bear with me a minute.

Item 1: Julianna has always been a bit of a cutup. She laughs—loudly and lustily–whenever anyone laughs, even when she doesn’t get it. She’d tell jokes that were funny because they were nonsensical.

Item 2: Julianna has never, ever, shown evidence of celiac symptoms. You ask her if her stomach hurts and she says no. We’ve suspected for a while that she has a high pain tolerance, which is particularly ironic given the level of drama that surrounds any medical procedure of any kind.

Item 3: Julianna has had behavior issues at school on an ongoing and escalating basis for the past 9-12 months. Now, mind you, these are not “behaviors” the way you’re thinking of them. They’re avoidance behaviors. Refusing to make eye contact. Hiding books inside her binder so she looks like she’s working when she’s not. A couple other things, but you get the idea. Behaviors that were NOT classroom disruptive, but which WERE causing her not to progress toward her IEP goals.

She had her endoscopy on Nov. 22nd. She started gluten-free diet that afternoon and returned to school the next day.

On day two, her teacher emailed me: “Julianna is a totally different person the last two days. I feel like we have our sweet girl back. I just wanted you to know.”

As the weeks of gluten-free diet have unfolded, we’re seeing the effects ourselves at home. It’s subtle, but there. We’re getting fewer nonsense answers. You can ask her a question and have about a 60% chance of getting a real answer, rather than about 25%. She will always have difficulty making the leap from concrete to conceptual, but she seems much sharper, much more with-it, than she used to.

It’s nice to see some results for the trouble we’re going to (and the $$ we’re spending). The down side is that those results are pretty hard to nail down into something measurable. When I screwed up and gave her the wrong leftover lasagna early in January, it took 3 days for them to see a “sassy day” at school. I never saw anything happen at home.

But still—it’s good to see an impact.

All of this stands as context for Julianna, this past Saturday, in form so rare, I had to capture it on Facebook: