Charlotte + Gluten = BAD

Charlotte went through a rough patch this summer. We didn't really know what was causing her behavioral issues, but after talking to the doctor and monitoring her very closely, we have narrowed her issue down to that silly thing called GLUTEN. We already knew that she was sensitive, but sometimes it's hard to feel convinced that we've found the issue when her reaction to gluten doesn't happen right after she's had it (it's usually a 1-2 day delay).

I truly understand what it means when people say their their kid has a delayed food sensitivity.

This summer we had quite a few gluten incidents happen in our church nursery. Charlotte even had her first goldfish crackers and it was reported that, "She really liked them!!" (as in...she ate a ton). With her gluten allergy, and mine as well, the side effects aren't immediate and they last for about 2 weeks after we've had exposure. 

It's not always easy to figure out the source of Charlotte's tantrums, but as I've been documenting her food intake, and resulting issues, the answer has become quite clear.

We go to a big church (over 2000 people) and there seem to be new helpers in Charlotte's class quite often (we aren't all that consistent with our service times so that doesn't help). I haven't been diligent in taking gluten-free snacks for Charlotte to eat during service (I feed my kids right before church, they don't NEED snacks when they are there - a topic for another day I suppose). Anyway, there were quite a few times this summer and over the past year where Charlotte was given goldfish crackers because someone in her class didn't see her allergy sticker (or I'd forgotten to put one on her).   

In the week following church (aka goldfish), usually 2 days after, Charlotte begins having quite crazy and hair raising screaming fits. Her eyes go blank (as if nobody is home) and she screams the most terrifying scream. There's no consoling her. It's frightening and also very sad, because there doesn't seem to be any way to help her when these fits happen.

When Sarah was watching the girls for us this summer, she experienced one of Charlotte's screaming fits and was a bit shaken up by it. I think these fits were partly a reason I had considered going back to work. Not that I wanted to abandon my sweet little girl, but because I was having a hard time dealing with Charlotte's fits on top of all the other stay-at-home mom things.

I've read quite a bit about food sensitivities in kids and all sorts of things about autism. Quite a few research pieces I read happen to correlate undiagnosed food sensitivities as being a leading cause of children being autistic. When Charlotte was having her episodes, I'm not going to lie, the thought crossed my mind a time or two. We had always blamed her fits on gluten, but after a while, it almost seemed silly to blame a food for her behavior issues - it just didn't seem right. And it was so hard to pin point because her reactions don't happen until a couple days after she's been exposed.  

I just randomly clicked on a previous post about Charlotte at 4.5 months, and this is what it read:
Charlotte appears to still be sensitive to gluten. I ate a couple things (not intentionally) on our recent trip and since then her shrill screaming and constipation have returned. Her scream gets both Pete and me really uptight. It's not pretty or relaxing and all I can do is try to feed her and when that doesn't work (it usually doesn't) we just try to bounce her and when that doesn't work, I leave the room. It's awful. I feel so bad for her because you can just hear the pain in her scream. :( Poor girl.

Reading that reminded me of Charlotte's first couple of months of life. They were pretty miserable. We came up with the term 'scrying' because Charlotte didn't just cry, she screamed. And she scried more often than not when she was an infant. It was miserable and there were many times where I had to leave the room because I just couldn't take it. We would be up all night with her. Pete was my hero. He's so patient and would bounce her and bounce her, trying to make her stop screaming.

When we finally eliminated gluten, all of her screaming went away. We had a happy baby and we were SO relieved!

It's hard to control every single thing our kids are eating, and I feel so lame telling people that Charlotte can't have gluten, but I'm realizing more and more, just how important it is to keep gluten out of her body.

There are a few food ingredients and products that have gluten in them that are really hard to recognize as glutenous. Did you know some mustard is not gluten free?

I read every single ingredient list these days... Here are the weird ingredients that often trip me up:

  • modified food starch - often derived from wheat. "Modified food starch can be found in many processed foods. Always take the time to read the label to ensure any food you eat is free of it in the absence of other gluten-free certification." (link
  • soy sauce, oyster sauce
  • any ingredient with 'malt' in it
  • natural flavors (this is a hard one)

I wish I knew why Charlotte's body doesn't agree with gluten (mine too). But for now, we will continue to monitor everything she eats and we will certainly be more diligent in keeping gluten away from her.

I write this here so that I can look back over time and see that this wasn't just an infant thing. No, it's still an issue and we need to be certain she stays away from gluten - no matter how hard it is to deny her a treat she sees everyone else eating.

It will be interesting to see if she chooses to try gluten down the road and to get to hear her first hand experience. I used to wonder if her tummy hurt and if that's why she screams like she does... but after talking with the doc and experiencing it a few more times, we're pretty sure it's a chemical reaction to gluten happening in her brain that causes her screaming fits. Whatever it is, I hope that living gluten free isn't a challenge for her down the road. We just want her to be a happy and healthy little girl.