Mar 22 2016

When Should You Tell Your Child That She has Celiac Disease? …Right Away, Duh!

Published by at 8:15 am under Celiac,Gluten Free

Mother and baby elephant

Did a mother do the right thing by hiding her daughter’s celiac disease diagnosis? Photo via

In the first paragraph of her article published in the Washington Post on Feb 8, Susan Stillman explains, “…there are times when I feel like a little less knowledge never hurt anybody.” Sure, I’ll give her that. I really don’t want to know the full details of my dad’s colonoscopy or how many calories are in the meal I just ate at the Cheesecake Factory. However, certain knowledge is kind of important to know, such as the fact that you have a serious medical condition that could eventually kill you if you stick with your current diet.

The title of Susan’s article is, “How I told my happy, healthy daughter about her medical diagnosis.” This title is mostly a lie, because Susan spends a majority of the article explaining how she actually didn’t want to deal with telling her 11-year-old daughter about the diagnosis. What did her daughter have? Celiac disease, a condition where the consumption of gluten slowly destroys the lining of the small intestine.

Just to be perfectly clear, if Susan had done even minimal research on the disease, she would have discovered that gluten can seriously harm the small intestine of a person with celiac disease even if they are asymptomatic, like her daughter. Perhaps she may have also run across the countless stories of adults who suffered for years with horrifying symptoms, like terrible stomach cramps, constant diarrhea, severe anemia, exhaustion, and malnutrition before FINALLY getting a diagnosis of celiac disease.

Anyone who has had to suffer the symptoms of celiac disease and struggled for years before receiving a diagnosis would have considered it a blessing to learn their diagnosis as a child. Susan, on the other hand, only considers it to be an inconvenience, mostly for herself. She writes, “Countless well meaning people tried to console me…I appreciate people’s kindness, but the truth was, I didn’t want to deal with it.”

Ignorance is NOT Bliss

It may have been easier for me to feel sympathy for Susan if she could reasonably claim ignorance, but then she had to go and write this:

“My husband runs an association of gastroenterologists and I told him, ‘I want you to search far and wide and find me a doctor who says we can blow this off. Our child is perfectly healthy and asymptomatic.’ I had no such luck. They told us that while children with celiac who eat gluten can appear to be fine, doing so continuously can cause damage in the longer-term…”

Susan has no excuse for keeping this diagnosis from her daughter (who is not healthy, by the way, if she is celiac and eating a gluten-rich diet). Yet, defying all wisdom, professional medical advice, and her duty as a parent, she withholds the information while her daughter is at summer camp and then during a subsequent family vacation. Only several weeks after the diagnosis when her daughter actually asks her about the results of all the tests, Susan finally fesses up.

Don’t Withhold Vital Medical Information From Your Children!

This should really go without saying, but less knowledge CAN hurt somebody if that knowledge is the diagnosis of a serious condition. As a parent, it is your duty and obligation to care for your children, and that includes steering them away from harmful behavior even if they aren’t showing severe symptoms right away. After all, I bet Susan wouldn’t let her 11-year-old daughter take up smoking, right?

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