Marcy Thorner

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Explaining Celiac to family members

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The grandparents – both sets of grandparents – in fact Alex had 3 sets of grandparents were all very supportive in terms of “Oh,” you know “you have this situation to deal with and we’re going to have to deal with it.” Unfortunately, it did disturb some of them. My dad, for example has been hesitant to deal with a lot of the food issues and building his knowledge of the food issues. He was just intimidated by that. Whereas he traveled with some of his 2 nd wife’s grandchildren, he has not done that with Alex because he did not want to be responsible for supervising her food decisions, when she was younger.

One of the instances that happened that I was so pleased by was, Alex went to visit her grandparents and it happened that their maid was there that day. Ad the maid didn’t know anything about Alex’s condition and offered this cute, little 3-year old a cookie. And my Alex, at 3 years old looked up at her and said, “Oh no, that’s not my special food.” And turned it down and said “Thank you” and got one of her own cookies and I thought, “We are off and running, we have got this thing licked.”

We were warned, early on that approaching the teenage years – as kids are becoming more independent and testing limits – we were warned to expect that Alex would make some bad decisions. And one of the caveats was “As you are farther and farther from your diagnoses, -- as you are eating a gluten-free diet continuously, and the condition of your intestines is improving – you are less likely to have a very noticeable reaction if you do ingest some gluten accidentally or even on purpose.” And to expect that a teenager will go out and go to McDonald’s with their friends, or go to Pizza Hut and eat and not be sick from it which becomes amble justification for “Well I must not have Celiac Disease anymore.” Which is probably the hardest thing that we’ll be dealing with in the next few years with Alex.

She has made some bad decisions, she’s bought things at the school cafeteria that she should not have. All you can do as a parent, I think is to reinforce that this is not a healthy choice and beginning to talk to them more about the long-term consequences of Celiac Disease. At some point you can’t supervise everything that your child does anymore. I’m Marcy Thorner.

My daughter Alex is 13 years old. She has Celiac Disease and we are living our life.