Our Celiac Disease Story {Part 2}: Happy to Be Gluten Free!

I feel like I'm getting rather obnoxious with all my posts about Celiac and food allergies. This blog is not necessarily a "food blog" nor an "allergy blog". It's just a slice of our life. And since Celiac and food allergies tend to be part of life...it's gonna be on the blog.

I promise to get back to topics other than food and blood tests and diarrhea and such, but indulge me as I write one more post.

Yesterday I wrote about how we discovered that Elle had Celiac Disease. But that's only half of the story. I wanted to share how things have been altered since we have made the necessary life changes in keeping her tummy and body safe and well fed.

I am not what any one would call an "observant mom". It takes me a long time to SEE things in my children and for my brain to make the connections. They say that hindsight is 20/20. It's odd how many things have come into focus since we received Elle's diagnosis of CD and made the move to a gluten free diet.

Elle did not have the typical signs and symptoms of CD. Many kids that are diagnosed are labeled as "failure to thrive" and sickly looking. My kiddo was born weighing 9.6 pounds and she never really slowed down. She's always been at the top of the growth charts. She's a tall kid. She's a pretty healthy looking kid. She didn't complain about stomach aches. She had a lot of energy.

She did have other red flags that I couldn't exactly identify then, but know now that they were screaming at me that something was wrong with my daughter.

For Elle's third birthday I threw her a rock-themed birthday party. As in rocks you pick up off the ground. Not rock and roll. Why would I do such a strange thing? Because I perceived that my little daughter had this thing for rocks. This weird, unexplainable attraction to rocks. She would pick up pebbles from the ground every single time we went outside to play or get in the car and immediately pop them in her mouth. Then she would suck on the rock and roll it around in her mouth. She did this so often that when we would clean out our van we would find dozens and dozens of small stones in her car seat and rolling around on the floor.

At first I figured it was just a toddler thing; little kids like to put things in their mouth. Then I figured she inherited Mommy's love of rocks; I still have my rock collection from when I was a kid. Then I began to worry. In addition to the choking hazard, it just seemed strange. Especially when I would watch her pick up a rock, lick it, dip it in the dirt, and then lick the dirt off the rock. Repeatedly. Strange. I would also catch her trying to lick metal and cement. Really strange.

I mentioned her idiosyncrasies to our pediatrician who tested for an iron deficiency. The tests came back normal. Both the doctor and I figured Elle just had an affinity for rocks. So I embraced her love of rocks, put her down in the will for my rock collection, and put together a rock themed 3rd birthday party.

Since Elle has begun a gluten free diet, I have not seen her eating rocks or licking anything other than the occasional popsicle or sucker. Her little body was trying to tell her and me something and we just weren't picking up on the clues. Now her body is able to absorb the nutrients it needs and it doesn't "ask" her to go eat rocks or dirt anymore. So now what am I supposed to do with this bucket of rocks?

There were other clues. Her hair was stringy and would fall out in bunches every time I brushed her hair. I was almost afraid to brush her hair because I didn't want her to be bald. Her nails grew oddly and very slowly.

Since going gluten free, her hair and nails are much improved.

The biggest symptom that Elle had of Celiac Disease was the "brain fog". My little third-time-is-the-charm baby was the quietest out of all of my children. She hardly ever cried from Day One. She was so sweet and passive and easily satisfied that she became the little wheel that got lost in the crowd where there were much louder and squeakier wheels hogging all the oil.

When she turned 18 months her behavior took a turn for the worst. She was into everything, just like any kid, by 100 times worse. I would cry to my mom and sister, "I don't remember any of the other kids doing this!". She could get into trouble quicker than any toddler I've ever seen. And so quietly too. I didn't even know she was dumping out soap bottles or climbing book shelves or sitting in the toilet until it was too late.

As the months went by, people began to comment about how quiet she was. We just figured she was the "shy one" in our little herd. Maybe she just couldn't get a word in edgewise with her two older, chattier siblings. But with time, her vocabulary and behavior were not improving. She had a hard time computing that there were rules to be followed. Time outs were useless. Spanking was even more futile. I was so frustrated with this little silent child of mine.

Oh, how I wish I had realized what kind of an intimate connection there is between food and brain and body, especially for children.

Even after we received the CD diagnosis I didn't realize that her behavior and lack of verbal development were being impacted by her intolerance to wheat. It wasn't until family and friends started commenting how much Elle was suddenly talking that I clued in. But indeed, shortly after we started the gluten free diet, her vocabulary EXPLODED. It could be coincidental, but I'm inclined to believe that she had been freed from a wheat induced, brain fog prison. Her body and brain were now receiving the nutrition they needed to function and process the world around her.

My husband, bless his heart, is not quite the believer I am. He is suspicious of doctors and feels they like to make up illnesses and problems just to keep the money rolling in. Me? I'm a collapsed-on-the-floor, crying-the-ugly-cry, praising-Jesus believer.

Discovering that Elle has CD may have been one of the more devastating events in our life, but on the other hand it has been one of the more liberating events too. I now understand why my child was doing and not doing certain things. I have the tools to help her on her path of development, physically, mentally, emotionally, spiritually. I can be a better mom for my daughter.

And while she is only three and doesn't have much to say on the subject, Elle seems to be happier. She is more social and more capable. She is interacting with the world instead of floating through it, destroying everything in her path.

I'm grateful that she was diagnosed at so young an age. She is very open to dietary changes and new foods right now. She (hopefully) won't remember how amazing a big fat cookie or homemade cinnamon roll tastes when made with "regular" flour. By the time she is dating and going out with friends, it won't be a big deal that she has to be vigilant about what she orders from a menu or eats at a party. Hopefully she won't feel too different about having CD. She'll be able to live an active life free of stomach aches, intestinal issues, infertility, osteoporosis, cancer, diabetes, or many of the other complications that can come with undiagnosed and untreated CD.

To make a very long story, very short: We are HAPPY to be GLUTEN FREE!


Wonder Woman said...

Thanks for posting the story. I personally am not having to worry about Celiacs, but I know others who are. And your hind sight clues will help others, I'm sure.

Jodi said...

Hind sight is definately 20/20 and I'm so glad you have the right answers. You have so much experience in this food allergy/celiac disease area, you should be classified as an expert!:)

Myya said...

I take forever to notice signs in my kiddos too. I think so much of it comes from a "its growning pains" point of view that my parents had. Seriously this was the answer they had for every single ache we had.

Man is she cutie & I LOOOOOVE that picture of her stuck in the toilet. That is awesome, good for you for grabbing the camera first!!!


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