We’re almost four years from Wren’s Celiac diagnosis, and we’ve
seen some amazing progress as well as suffered some serious blows. Let’s start with the good news about all the
things that make having a six year-old with Celiac much easier than having a
two year-old with it.
She knows when to say no
Wren was offered a gluten-free juice box at Sunday
School. I knew it was gluten-free and
had approved it for the teacher to give to her before I left for church. However, I broke my own rule: I didn’t tell
Wren it was okay to take food or a drink from an adult who was not her parent. When I left the room for church, the
conversation went as follows:
Sunday School Teacher:
But your mom said you could have this.
Wren: My mom did not
say that to me.
Sunday School Teacher:
But it says gluten-free.
Wren: Gluten is not
my only problem. I’ll wait for my mom.
She left Sunday School with her gluten-free juice box
unopened waiting for my approval, reprimanding me for breaking our rules.
She really knows how to say no, even when she really wants
to say yes
There was lipstick.
If you know Wren, you know this is a thing. Her friend had received lipstick from her
grandma and decided to demonstrate how glorious it looked on her by modeling it
for Wren. Then she offered it to
Wren. All this happened out of my sight,
but when the princess-clad ladies made their way to the living room I noticed
Wren did not have lipstick on. She came
to me and said, “So, that probably has gluten, right?”
Me: It’s possible and
we just don’t know because I haven’t looked it up. A lot of lipstick does.
Wren: Yeah, that’s
why I said I couldn’t wear it. I don’t
want to get sick.
Her eyes were sad, but she was proud of herself for saying
no to something she knew might be bad for her, and so was I. Plus, gluten-free lipstick does exist, and
she is reminding me of that even though I don’t want her to have lipstick at
the age of six. She keeps up a steady,
“So, it was pretty awesome how I didn’t use that lipstick, huh, mom? It’d be nice if I had one I knew was safe,
right?” The kid is smart and persistent.
Play-Doh happened, once, and no one died
Okay, so I would never let Wren play with Play-Doh out of my
sight, and previously I never let her play with it when I could see her. It has gluten in it, and Wren likes to put
her fingers in her mouth. But when we
were at a playdate where a Play-Doh table was within reach and there were other
kids at the table, I gave her permission to play with it under my supervision
and then go directly to the sink to wash hands.
She did, without putting them in her mouth first. It was not the least stressful day in the world
for me, but it was doable. I’d be okay
with not doing it again and may start carrying our own homemade gluten-free
dough everywhere, just in case.
And the other side of things, well, they haven’t been
awful. Basically, what we were told in
the beginning-if Wren stays off gluten, rebuilds her system, tows the line,
etc. she won’t be at risk for all the secondary auto-immune diseases Celiac threatens-not
actually true. Immunology and the
understanding of it is evolving, and a new finding is that people with Celiac
will probably always have to watch their backs for thyroid and liver failure,
intestinal cancer, diabetes, and other fun diseases. It stinks since my kid considers raspberries
and the occasional gluten-free brownie to be the highlight of junk food eating,
but there it is. After seeing the doctor
for an enlarged thyroid gland or what may be a goiter, we then found out her
liver is being wonky causing the thyroid issues. Her liver, the same liver that was being
weird four years ago when she was first diagnosed. The liver apparently produces this fabulous
stuff (stuff is as technical as I get, I’m not a doctor) that the body sometimes
mistakes for gluten. So, if Wren’s body
has an off day and needs to rage at something, it goes for her liver. And the liver controls production of needed
T-3 and T-4 to an extent, so it messes with her thyroid. The naturopath is rebooting her, and she is
still in much better shape than she was when this all started. But we
are a little disappointed that the insanely hard work the kid does every day
isn’t enough to get her body to give her more of a break. At least we know.
Plus, Wren says Jesus is the healer, so it will be okay. And she’s right. At least we know that, too.
