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Talking About Celiac Disease With a 6-year-old

I was going to post this on Friday of last week, but I had internet problems all day, then the rest of the week since then I’ve been trying to keep up with homework. I’ve had this post written up for a whole week, I just haven’t gotten around to posting it till now. So, as you read, keep in mind this happened last week, not this week. (and I’m entirely over the accidental glutening, thankfully).

Tuesday night I did something kind of not so smart. I accidentally dropped the tub of earth balance “butter” into my plate of food at dinner. I didn’t know what to do. My mom didn’t either. So, I decided to just go ahead and eat my dinner. However I quickly knew it was not a wise idea at all. The inside of that tub is gluten free and not contaminated (I’m the only one who uses it, my mom and sister use a different one and my dad uses real butter). However, since I’m the only one in my family right now who is gluten free I don’t live in a totally gluten free environment. There’s always cross contamination that’s bound to happen (and it drives me nuts at times). And, sometimes I forget to wash the table… so that tub has at times sat on wheat bread crumbs and occasionally on wheat flour. But of course, this was not going through my head at the moment.

I managed to finish my dinner, but I knew something was wrong. I struggled to breathe more than usual and my lungs decided they needed to react to the gluten too. The stomach ache, the brain fog. The exhaustion, the soreness from the extra effort(and extra muscles that you usually don’t use to breathe) it was taking to breathe. I gave up on trying to do any homework that night.

Wednesday morning came and I wasn’t feeling as bad, but I still was definitely back to “normal”. I had to have my mom and sister do my paper route for me which I usually do on bike. There was no way I was going to bike 5-6 miles. By Wednesday night I was feeling a little better, just enough to make it to Awana and help during small group time. As I got out of the car with some friends, I took their daughter’s hand and we went over to the Sparks (K-2nd) building. There’s a ‘tradition’ the 2 of us have each week. She always says “let’s jump over the cracks!” Usually I’m all for jumping over the cracks in the pavement, but not that night.
“I’m sorry Hannah, but I can’t do that tonight”
Naturally she asked, “why not?”
How to explain to a 6-year-old what celiac disease is… hmm, I wondered.
“I ate something that made me sick last night and my stomach still isn’t happy”
“what made you sick?”
“Well, Hannah, I have something called celiac disease,”
“Cel-e-what?” She asked as she struggled to pronounce the strange word.
“Yeah, it’s called celiac. It’s a hard word to say.”
“Cel-e-ac. What’s that?”
“It’s when my body reacts to some things like wheat, rye and barley. So if I eat those I get sick. So I can’t eat normal bread like you or use normal flour.”
“So how did you get sick?”
“I accidentally dropped wheat in my dinner last night.”
By then we had crossed the parking lot and climbed up the stairs and gotten to the door to the Sparks room. The conversation ended (with the sighting of a dead stink bug by the door), but I have a feeling that this conversation may come up again soon.

Even though I don’t like having celiac disease, I’m all for advocating and teaching others about it so they can help keep me safe. And chances are that they will meet at least one other person with dietary restrictions in the future. So wherever I go if the topic comes up, I share and teach them about celiac, and sometimes it also comes to other food allergies/intolerances. I’ve told my grandmother about it, and I think that conversation was harder than this week’s with a 6-year-old. Explaining in a different language when I don’t remember the words for barley and rye… I could only remember wheat, oats, rice, potato, etc.

And, by the way, I’m pretty much over the glutening. 🙂 My energy level is back to normal and I’m focusing much better again and my stomach is not throwing a fit each time I eat something. My lungs are still working on getting back to baseline, but they’ll get there too. Hopefully just a few more days.


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