Your child complains that his feet hurt. He cries and limps, so you take him to the doctor. The pediatrician sends you to a pediatric podiatrist.The pediatric podiatrist examines and manipulates both feet but finds nothing, so he gives your child an anti-inflammatory. No relief. He gives your child other pain pills to take. Nothing.
The frequent crying continues.
A few weeks later, your child's limp becomes more profound. He starts to complain that his knees, and sometimes hips, hurt. Your once easy-going child is now acting out. He's unhappy and miserable and his behavior reflects this greatly.
You visit another doctor.
She puts in orders for x-rays.
You go to another doctor.
He suggests physical therapy.
Another physician suggests a behavior therapist.
By now, your child doesn't want to go to school. You start to notice that his school work is declining. Your frustration level is increasing over a lack of an answer.
This is your child, who you love with your whole heart and soul. You'd do anything to relieve his misery.
You take him to yet another physician and he says, "His shoes are too small."
All this time, all your child needed was a bigger pair of shoes.
Of course, this is a "silly" scenario Parents would surely have this mystery solved way before it got this far. But for SO so SO many, this is what it is like when it comes to getting a celiac diagnosis. I got up every morning and ate my bowl of Raisin Bran, having no idea I was causing the start of my daily decline. I never made the connection---but neither did the doctors.
Symptoms related to undiagnosed celiac are misdiagnosed and left undiagnosed not just for a week, or a month, or even a year. It is often left undiagnosed and untreated for YEARS! For me, it was decades, continuously consuming foods that caused my body to attack itself. Transitioning to gluten free was like putting on a comfy pair of sneakers after spending the day in shoes that pinch and scrunch---except I wore that pair of shoes for decades.
So this is where my passion comes from, a lifetime of just needing a different pair of shoes (a different diet). As that person who lived a childhood with undiagnosed celiac, I want routine testing. It makes me beyond sad knowing that there are thousands and thousands (and thousands and thousands) being affected by undiagnosed celiac or by someone else's undiagnosed celiac (as my kids were, being raised by a mom who was not all she could be---not all she would have been if she'd been gluten free.)
(This is how I was finally diagnosed, through a Celiac / Osteo study).
Wouldn't it be amazing if those who hear our children's complaints the most often (besides family) and who see our kids on a regular basis, to start recognizing celiac signs and symptoms? To start seeing "shoe size" ("celiac") first -- not last. School nurses cannot diagnose, but with some education, maybe they can help families by offering information.
School Nurse Celiac Education Program: Gabriel's Journey
School Nurses care about our kids. Let's help them detect the signs and symptoms.
Please share. Please make a difference.