I wrote this post awhile ago and shared it elsewhere but I wanted to update it and share it on here. Since the original post we’ve also realized that Raeca is at a minimum lactose intolerant and possibly just straight up dairy sensitive. I’m planning on taking her to a naturopath in the next few months and getting a few tests done and doing some elimination diets so expect some updates in the future! (I’m also planning on getting myself tested too, I’ve been meaning to do that since my Crohn’s diagnosis to see if there are other foods I should avoid.)

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Shortly after Jared was diagnosed with celiac disease 3 years ago we started to wonder if Raeca had some degree of a gluten sensitivity. Research shows that if someone is diagnosed with celiac there is a 1 in 20 chance a close relative also has it.

Since she was showing some symptoms we took her to get the blood test which ended up coming back negative. Even though the results were negative we did make the decision to keep her gluten free at home. It was easy enough to do since Jared was gluten free anyway and then when we were out we let her eat gluten (for the convenience factor). Since she tested negative we weren’t as concerned about keeping her on a strict GF diet since her symptoms were fairly mild at that point and we weren’t worried about it damaging her intestines (a major concern for those with celiac).

Fast forward to a couple summers ago when we realized how big of a difference gluten in her diet made. We totally slacked off with keeping her gluten free that summer and let her eat a few gluten things here and there, but the big light bulb moment came after we let her eat some pizza at a kids club.

She had the pizza on a Friday for supper and that weekend was hard, she was not herself at all.

Gluten in tolerance in children will some times show in physical symptoms, similar to adults but more often it mostly shows in their behavior. Raeca is, and always has been, fairly strong willed but at this age she is much easier to reason with; if she can see why we are asking her to do something she will usually listen. If she has been glutened the child that you can reason with is gone.

Like I said, the weekend after she ate the pizza was the worst and it was very hard to watch as a parent. She had no control over her emotions, she was mean to her brother and she was very down on herself, calling herself stupid and mean because she had been mean to her brother. At one point she was even lying on the floor flailing around and crying. The gluten had taken control over her emotions.

After she ate the pizza it took two weeks before the gluten was out of her system and she became her normal, happy, helpful self again.

While children that are gluten intolerant may show it through physical symptoms it is often the behavioral ones that are more prevalent.

SIGNS AND SYMPTOMS OF GLUTEN INTOLERANCE IN CHILDREN

 

Common Physical Symptoms of Gluten Intolerance in Children:

• bloating
• excessive gas
• diarrhea or constipation
• skin rash within a few hours of eating gluten
• dark circles under eyes
• frequent colds and flus
• runny nose that stays even after cold is gone
• headaches
• joint pain

Common Behavioral Symptoms of Gluten Intolerance in Children:

• extreme mood swings
• meltdowns
• irritability
• anxiety
• depression
• brain fog
• violence

I have read that if a child has a parent with celiac the child should get tested every 2 years since false negatives are quite common in children. While it is a simple blood test there needs to be a significant amount of gluten in the child’s system for the test to be accurate. For us that means there is no point in testing our daughter for the time being. Right now we know she is highly gluten sensitive and in the future if she wants to go back on gluten to have the test done that is completely her choice but at this point in her life it doesn’t seem worth for her to eat gluten for 6+ weeks and be miserable just to get the test done.

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Since writing this post we’ve once again slacked off with keeping Raeca off of gluten. She doesn’t usually have any or much at home since we generally don’t have it in the house but over Christmas and in our recent trip to Mexico we mostly let her eat what she wanted. And guess what? It shows.

I was recently talking to another mother whose daughter reacts the same way to gluten (behavioral issues) and we were talking about how hard it is to keep them off of it 100%, especially around holidays or when going to a friends house. I think until Raeca decides she wants to be 100% off of gluten or we get an official celiac diagnosis we’ll try to do our best at home but be more lenient when we are out and about.

If this post resonates with you, you may want to check out this post I wrote a few years ago about raising a gluten free child.

If have a child that has celiac or a gluten intolerance I would love to hear your experience,
what kind of symptoms were the ones that raised a red flag for you?