Celiac Disease: When Your Toddler is Diagnosed

Julie Ryan Evans

Mother and DaugtherThough once thought to be rare, celiac disease is increasingly being diagnosed in children and adults alike. According to the National Institutes of Health, as many as 1 in 133 people have the disease.

Simply defined, celiac disease means a person can't tolerate gluten, which is found wheat, rye and barley. It's used in many foods, as well as medicines and beauty products. Even small amounts can be damaging to persons with the disease. If left untreated, celiac can have serious repercussions and is thought to cause everything from nervous system disease to organ and gynelocgical disorders.

Once it's diagnosed, the only known treatment -- complete elimination of gluten -- can begin. And while it's fortunate there is a way to treat the disease and that the earlier it's diagnosed the lesser the effects on one's health, it's still a difficult journey for a family when it's their child that is diagnosed.

My friend Jana's daughter, Catherine, was diagnosed as a toddler -- at just 3/12. Here's a small glimpse at their story:

What was your reaction when Catherine was diagnosed with celiac disease?

I did not believe the diagnosis at first because none of her doctors had even mentioned celiac disease as a possibility - she did not have any of the typical or "classic" symptoms. Then, I went through a period of sadness knowing that for the rest of her life she would be restricted in what she could eat. 

At the time I also wished I had it too (it is genetic) so she would not be alone. As it turns out, my father was diagnosed after her, so she is not alone!

What did you know about the disease at the time?

I knew nothing about celiac disease at the time -- I do not think I had even heard of it.

Do you feel like it was harder or easier that she was diagnosed as a toddler rather than later in life?

I think it was easier that she was diagnosed as a toddler because she does not know anything else and for her it is just a fact of life -- the way it has always been.
What has been the most difficult part?

The most difficult part is being able to find safe food to eat while traveling or eating out.

What advice do you have for other parents of toddlers who are diagnosed?

The first thing I would say is if you are newly diagnosed is to know that it gets easier to find things that are safe (and good) to eat. It is very overwhelming at first to learn to read labels and find good gluten-free options for your child to eat but it will become (almost) effortless! Also, gluten-free food today is fantastic!
If you have one nearby, join a support group (R.O.C.K. -- Raising Our Celiac Kids), it is great to see that there are other children that are like them and the parents are great resources.

Has your child or a child you know been diagnosed with celiac disease?

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