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What are the chances she’ll have that gluten thing?

I’ve been asked this question in some form or another by nearly everyone in my life. People are curious. How likely is it that my newborn daughter Calah will end up with celiac disease (aka … “that gluten thing”)?

People also ask things like, “So when are you going to get her tested?” and “Are you just going to have her avoid gluten from the start?”

They are fair questions. I wondered some of these things myself.

Naturally, I did some research. According to the Celiac Disease Foundation, people with a first-degree relative (parent, child, sibling) with celiac disease have a 1 in 10 risk of developing celiac disease. It is hereditary, meaning it runs in the family.

The disease affects 1 in 100 people worldwide. That means Calah’s risk is higher than your average Joe, but I take some solace in the fact that she only has a 10 percent chance of having the disease. The odds could be worse, I suppose.

No one in my family, besides me, has been diagnosed with celiac disease at this point. Both of my parents got tested for the disease and came back negative. They did not do the genetic testing to see if they are carriers of the genes, so we aren’t quite sure who’s the culprit. 😉

Keep in mind, just because someone has the genetics that allow for celiacs does not mean they have celiac disease. Celiac disease must be onset in someone who carries the genes. The Celiac Disease Foundation site says, “People with celiac disease carry one or both of the HLA DQ2 and DQ8 genes. So do up to 40 percent of all people. Carrying HLA DQ2 and/or DQ8 is not a diagnosis of celiac disease nor does it mean you will ever develop celiac disease. However, if you are on a gluten-free diet or are a first-degree family member of someone with celiac disease (parent, sibling, child), genetic testing can help to rule out if you will ever develop celiac disease.”

What does this all boil down to? A few things.

  1. Of course, I hope Calah doesn’t end up with celiac disease. I am sad to even think about the possibility. At the same time, I’m reassured by how low her chances are of having the disease and by how manageable living gluten-free has become.
  2. I may decide to do genetic testing at some point to see if she carries the genes. If she does, I still don’t plan on getting her tested right away for celiac disease unless she shows symptoms. Calah could go her whole life with the genes and never possess celiac disease. She would need to get tested every year (… or month … or week) to know whether or not she has developed the disease since the last test. Who wants to do that? I will just keep an eye out for any symptoms. If I notice any, we will get her tested then.
  3. Yes, I will feed her gluten. Since there is no way for us to know if Calah has celiac disease without her eating gluten, I will make sure she is enjoying a well-balanced, normal diet. She will likely eat less gluten than most people, because our house is naturally stocked with gluten-free goodies. I will not keep her away from gluten when we are out or when she is at school.

I hope this post clears things up for folks. Keep in mind, these are just my thoughts. I recommend parents do what you and your pediatrician believe is in the best interest of your children.

Parents with celiac disease, what has your approach been to this topic?

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