4. Transition Plan

A diagnosis of Coeliac Disease can be both a relief and a shock: a relief because suddenly your health problems over the last 5 years or 10 years all makes sense but also a shock because physically the change in diet and lifestyle is major and mentally you feel overwhelmed.

Depending upon your health,  you might find that you have the luxury of taking a go slow approach to the change.  You read so many stories of people getting their diagnosis 2 weeks away from the family reunion for Christmas or special event and were able to delay the change. And then you listen to stories of people who were so sick they were hospitalized and had to, without question, go gluten free immediately.

What do you do!  Like all conundrums, it depends….

Our 15 year old  son received his diagnosis 8 weeks before his 2 week school language tour to France. Our quandary was that if he went totally gluten free before his sojourn to France then how were we able to guarantee that he could eat gluten free, in a non-English speaking country and without his parents to make food decisions for him. And if he was totally gluten free by the time he landed in Paris and he accidentally ingested gluten, then how sick would he be and how fair was it to expect his teachers to take on the responsibility of keeping our son gluten free.

We spoke with the dietitian and he was horrified that we would even contemplate not converting our son to gluten free immediately.  We spoke with the specialist and while her line is “he must eat gluten free for the rest of his life”, she listened as we talked about how we might reduce his gluten intake so as to keep his extreme symptoms at bay but still allowing him to have tolerance to gluten.  We spoke with the GP and he was all for our son being able to enjoy the cultural experiences of France which are entwined with food.

Similarly a friend had three of her five children diagnosed with Coeliac Disease two weeks away from the family holiday for Christmas.  Her transition period ended up being 6 months.

For our son we were able to strike the right balance, a happy medium between consumption of gluten and eating gluten free.  We had a written plan in place which was given to his teachers and which he was versed in.  He had a quick crash course in how to explain in French his condition and his dietary needs as well as learning to recognize the French words for all the gluten foods.  And our son carried enough snacks and packets of biscuits and cereals in his luggage to see him through.

In retrospect, we were fortunate to have had an excuse to delay going totally gluten free immediately.  Those 3 months, while hectic,  were a grace period: a time to get ourselves organised, a time to get our heads around this major shift in our lives.

I am not advocating going against the advice of your doctor or specialist or dietitian.  Every newly diagnosed coeliac has different circumstances and health issues.

What I do suggest is talking with your GP and specialist about your concerns or your family situation or your immediate obstacles and together put in place a transition plan that works for your child and their circumstances.

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