It's official.
My dearest daughter has celiac disease, like her mother. The blood tests were off the charts, but the endoscopy confirmed it. Here's her tale. Hope you don't mind that it's not a recipe.
My sweet baby was a very sweet baby. Easy, and happy. Except when it came to going #2. She struggled with this from about the time we started her on solids. It was horrible, really. Constipation was a constant companion. She would withhold which would just make matters worse. We are talking about a baby here, and yet she would still hold it until she couldn't any longer. The doctor suggested improving her diet, reducing milk, adding more fiber. We even used stool softeners and, yes, suppositories. (I wonder if she's going to like me telling you this?)
Anyways, when she was 2, I was diagnosed with celiac. I wanted to get my two children tested, but the pediatrician didn't see the need. You see, I have giant children. They literally are amazing growers. And apparently, children with celiac, aren't. Or so he said. So I didn't press for it. But in the back of my mind, I knew.
Every well child checkup after that went pretty much the same. The doc would marvel at her 95th percentile stature and tell me I had no need to worry about celiac disease. Even though she still was having bowel issues such as abdominal pain, gas, constipation, and fatigue. I would nod and say okay but secretly I knew something was wrong, and I knew she was going to end up with a diagnosis some day. I almost started hoping that her growth would stop so I would have a reason for her to be tested, you know, a reason besides that whole motherly instinct thing.
Now I don't blame her doctor. He's amazing, caring, funny, and great with my children. We've had the same one for 4 years now and I couldn't be happier. But I also know that I know a little bit more about celiac disease than the average gluten-eating person, even maybe more than the average pediatrician. So this year I was a little more persistent at her well child. The doc heard my concerns and told me he'd write a lab order, if I wanted him to. I didn't cave in to his expertise, and so I took the order in my clammy little hands and had her blood drawn that same day, before my courage waned.
I was not surprised at all at his Saturday morning phone call. Tests came back. He referred us to a GI. Apparently a normal reading for the celiac panel is 5 or under. Her numbers were greater than 100. Because they stop counting at 100.
We met with the Pediatric GI. He was also great. Her endoscopy was scheduled for a week later. But it was only to confirm. He told me that in his experience, children with those kind of numbers from their labs are positive for celiac 100% of the time. 100%? Well then why do the endoscopy? It seemed a bit redundant. But we went.
The endoscopy was pretty scary, for both of us. She worried about it for the entire week. I was okay up to the point that they put that little mask over her nose and mouth and she fell asleep. Umm, you know how to wake her up, right? She's not dead, right? Because she looks like she's dead. I was ushered out for the rest of the procedure and waited in the children's hospital parents room. Too antsy to do much of anything, I watched the other parents. I wondered what their children were in here for. I thought of all the horrible diseases and maladies that possibly afflicted their small babies, and I was so grateful for celiac disease. So grateful. Here was something I could help her control, something I already knew how to control, and she could live a long, healthy, gluten free life.
Once it was over, the GI took me into a small room to discuss the results. The biopsies wouldn't be done for a few days, but she had the scalloping of her duodenum, indicative of celiac disease. Were any of us surprised?
I went in to her recovery room, where she was still a little high from the anesthesia. She hadn't been able to eat all morning, so they gave her a popsicle. She didn't like feeling drugged, and her throat was sore, and she wanted to go get something to eat. I couldn't wait to take her home.
On the way back to grandma's to pick up her siblings, she wanted to stop and get food. I thought for a minute. Ummm, there aren't really any fast food places that have healthy gluten free food. So what have I been eating? French fries and milkshakes. Yeah, I can't feed that to my child for lunch. For the first time I thought, Wow, this is going to be different. Not only do I need to feed my daughter gluten free, but it needs to be healthy. Maybe this will be good for the both of us.
So now we have a whole new world of gluten free living to enter. What on earth do we pack for her lunch? What about birthday parties and class parties? Do I need to start baking more gluten free foods so she doesn't feel deprived? Do I tell all her sunday school teachers, and piano teacher, and all the other adults that give her treats? Or do I trust her to remember to check labels and ask if things contain flour or wheat?
I'm super lucky in that she's not a picky eater at all. In fact, she loves vegetables and fruits and grown up food of all kinds. I know that this will be hard at first. But most new things usually are, and as she starts to feel better, I know it will be easier and easier.
I'm so grateful for celiac disease. It really could be so much worse.
