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Helping School Nurses Understand Celiac Disease

7/9/2016

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There are now nearly 100 more school nurses who understand celiac signs and symptoms. What a blessing! Celiac is, after all, the most common genetic autoimmune disease---yet over 80% are STILL undiagnosed!
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For years I've been saying, "Imagine if school nurses understood celiac signs and symptoms." After all, they are the ones who see the kids who don't feel well, day in and day out. They are often left helpless in wondering "what's wrong?" Just imagine if they understood the signs and symptoms and had the materials to offer families that could lead them to their doctors with questions and for testing.

So, along the way, I've met other celiac awareness activists with the same passion, and one in particular who actually created a program specifically for school nurses. "If you build it, they will come," right? Well, not always. Its a free program for anyone to request and provide their own school districts. Its clear, and simple to present, or to go through individually. I thought, (as I'm sure Sybil did) this would just blossom. Some seeds, however, take a bit longer to grow.

BUT----Yesterday, I was given the great privilege of actually presenting this program to nearly 100 school nurses! I'd been looking forward to this kind of event for nearly 16 years, when I was diagnosed with celiac and wanted to scream it from the rooftops. Yesterday was such an amazing opportunity----and it went fabulously.

The presentation (an hour in total) was so well received, with questions that followed and many who approached me after with more questions and with words of gratitude.  This program was inspired by the very scene I have always imagined: a school nurse who recognizes the possibility of celiac and directs a family to their physician with the right questions. Sybil had previously distributed books and materials to her local schools, a seed of its own. And what one nurse learned from it helped her recognize possible symptoms in a very unhappy, unhealthy 4 year old. She provided mom with information, and the rest is history. This gave Sybil the passion and energy to then create Gabriel's Journey, a school nurse celiac education program. 

I not only referenced Gabriel, however, in this presentation, I referenced myself. This is very (very) personal to me. I WAS that child who grew up with undiagnosed celiac. My life, and my family's life, was impacted by my unanswered health issues. My kids' lives were impacted, being raised by a mom with undiagnosed celiac, (more tired, more anxious, and less happy than I would have been had I been gluten free. Not a doubt in my mind.) And my son's life was impacted with undiagnosed non-celiac gluten sensitivity. Once gluten free at age 11, (recognized through education with my own diagnosis) he became happier and healthier (even though I didn't see him as someone who was "sick" or "unhappy" to begin with.) 

Anyone can offer this presentation to their local school. Personally, it would be a dream to do this presentation over, and over, and over, traveling and educating. (Of course, this kind of thing doesn't pay----and unless I found a way to make this my paid "job" it is unrealistic, unfortunately.) But I'm happy to do this locally---and ecstatic that it went so well. 

​ Please check it out: 
Gabriel's Journey

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    A Children's Book
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    Our inspirational journey also includes the frightening reality that hospital food isn't always safe for those who need to be gluten free.
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