01mrm,  Gluten Free,  My Boys

Genetic Testing for Celiac Disease

I got the call today.  6:15pm.  Caller ID on my iphone read “Dr. Sally – Work”.  Here we go again, I thought…..  and then I answered.

Blood work was in.  Nathan’s test results showed that he does in fact have the same Celiac gene that Lucas and I have.  That brings our household ratio up to 3:1 for Celiacs vs Gluten-eaters.

Lucas’ allergy testing came back inconclusive.  He was negative on all the big ones –  dairy, soy, egg, nuts.  Environmentals were negative as well.  This is great, except for the fact that something is still causing his eczema.  His IgE levels were elevated, so there is an immune response to something in his body, we just don’t know what.   So, more research in the works, but at least I don’t have to worry about keeping him dairy and soy free in addition to his gluten free diet.   Woo Hoo!

Ok.  Now back to the Celiac testing.

Because of the high incidence of Celiac in my family, our kids have always eaten gluten free.  Their health is our number one priority, so we didn’t want to expose them to anything that could be harmful.  We wanted to know their chances of developing Celiac Disease, so we went with genetic testing from Prometheus Labs.   Both our boys have the HLA DQ2 gene.  They are in Prometheus’s risk category 4, with a “very likely” chance (10 times that of the general population) of developing Celiac Disease.   Because of this, Ryan and I have decided to keep them on a gluten free diet, in hopes of preventing them from ever developing the disease itself.

This was not a decision we took lightly.  Keeping the kids gluten free at play dates and in school at such a young age is and will continue to be a challenge.  Making sure they don’t miss out on birthday parties, and always have their own special treats will take extra planning and work.  Two growing boys eating gluten free foods would not be easy on the budget.  But none of this matters.  When it comes to health, it is an easy choice.  We want healthy and happy kids, and if a simple diet can almost ensure that they will never develop Celiac Disease, then that is what we are going to do.

The boys are three years and 13 months old now, and have never eaten gluten.  They probably never will.  As they get older and begin to understand more about their special diet, we will make sure they understand their situation and why we made the choices we made.  When they are old enough, they can make their own decisions about whether they will eat gluten or not.  As for now,  we are doing what we can to protect them and to keep them healthy and safe.  One of my biggest goals as a mother is to feed my family delicious and healthy gluten free food, and help them to understand and feel how well good food can make them feel.  I hope that when they are old enough to leave our house, they will leave with a sound respect for their bodies, as well as the knowledge they need to take care of themselves and to make healthy choices.


  • Alisa Cooks

    I think it will be so much easier for them if they haven’t had gluten- hard to have cravings for something you have never had! So great that you diligently cared for this right from the start, just in case. It turned out to be a good decision!

    • Suzanne

      Thank you Alisa! It is such a struggle, not wanting them to feel left out in their food choices, versus trying to do the best thing for their bodies. I think we made the right choice. But as a mom, I still question myself daily, only wanting the best for my boys.

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