Thursday, March 19, 2015

Lipstick, Play-Doh, and Juice Boxes: Reflections on the Progress of a Child with Celiac

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.

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