But if you read this abstract from the study, you will see that the numbers are much higher. This article gives that "1:133" number to the "not at risk" population. When it comes to "at-risk" groups, which includes first degree relatives, second degree relatives, and those with symptoms, the statistics are much higher, ranging from 1:22 to 1:56 having celiac. So, if my understanding of how math works is correct, the statistics from this study show us that celiac disease affects far more than "just" 1:133 when you combine statistics from both "at-risk" and "not at-risk" groups.
And even though more than a decade has past since this particular study (that named celiac the most common genetic disorder) was released, over 80% of those with celiac remain un-diagnosed. Of course, there have been many studies since; studies that connect dozens and dozens of symptoms and associated diseases to un-diagnosed and untreated celiac disease and non-celiac gluten sensitivity.
And yet - routine testing is yet to be the norm.
And yet - testing of symptomatic patients is yet to be the norm.
Here is just a sampling of what far too many of us have gone through and continue to go through as I shared in these "Before and After" pictures and stories a year and a half ago.
Far too many medical professionals still remain under-educated in symptoms of un-diagnosed celiac disease and non-celiac gluten sensitivity.
One of these people is Sybil Nassau, who founded GIG ShorelineEast. We have never met in person; she lives in Connecticut and I'm in Illinois, but we have the same drive: to see kids properly diagnosed.
Sybil's passion led her to the creation of Gabriel's Journey, a School Nurse Celiac Education program. The materials are ready upon request, making it easy for individual nurses - or better - for groups of school nurses to use these presentation materials in order to better understand and to better recognize celiac symptoms in the children they see on a daily basis.
My passion led me to writing Adam's Gluten Free Surprise: Helping Others Understand Gluten Free (and Hailey's Gluten Free Surprise, the identical girls' version) - a children's book that kids who have to be gluten free can connect to - and - more importantly, a book that helps the important adults in their lives understand how strict this diet is.
I personalized my children's book in order to create Gabriel's Gluten Free Surprise, (identical to the Adam and Hailey versions, except Gabriel includes information about, and links to, Gabriel's Journey.)
So now we need to get this information in the hands of our schools. This is where your help is needed. You can either contact your local school and directly share information about Gabriel's Journey with them, or you can just donate a copy of Gabriel's Gluten Free Surprise.
*When donating a copy of this book to your local school(s), please make them aware of why you are donating it. Please direct it to the administrators or to the school nurse and request their participation in this School Nurse Celiac Education program.
Or - donate any book of your choosing, from any author! I don't want to sound like an advertisement. This isn't to see how many books I can sell. This is about reaching out to schools. This is about seeing how many school nurses we can educate (and by offering a copy of Gabriel's GF Surprise, they will also have a children's book that helps any teachers of gluten free students to better understand how strict this diet is.)
Let's increase awareness in order to increase proper testing - and ultimately diagnosing and treating of our kids who are suffering needlessly. The information is out there. The testing is available. The gluten free food is everywhere. Please help make this happen.
At the beginning of the month I shared that I will donate a portion of all Gluten Free Surprise sales to Gabriel's Journey. The month is almost over. For what it costs to purchase a couple loaves of gluten free bread or packages of gluten free cookies, you can share information with your local school that could lead a child (or children) to a proper diagnosis. I know many parents who wished their child didn't have to wait so long to be tested. If this helps one child, isn't it worth it?! Just Imagine!
$1 for every paperback copy of
Gabriel's Gluten Free Surprise, Adam's Gluten Free Surprise,
and Hailey's Gluten Free Surprise
and $1 for every 3 kindle copies of Gabriel's Gluten Free Surprise,
Adam's Gluten Free Surprise and Hailey's Gluten Free Surprise
sold through Amazon.com from October 1st through October 31st, 2014.
And - $1.00 per bulk order purchased through this website. (Bulk orders are already priced so low that I am only able to donate $1 per bulk order, not per book.)
(donations up to $5,000)
(Does not include wholesale purchases, free kindlematch books, or
free downloads through kindle unlimited.)