myself, playing with dolls. Babysat from the time I was 10. Seriously seems odd to me now that I actually babysat a neighbor’s infant when I was only 10. Yikes! Loved being a mommy! Was an in-home babysitter when my kids were little. Kids. When I went back to work after being a stay-at-home mom for fifteen years, my job was all about more kids. I became a teacher’s aide in an Early Childhood Special Ed classroom. Kids. After being an aide for five years, I went back to school (in my 40’s) with a goal to acquire a teaching degree – and I did it! I loved my job as a PreK teacher – and now –as a birth-to-three home visiting parent educator.
When I was diagnosed with celiac three years after I became a teacher’s aide - and then learning more about it – and reading about the benefits of gluten free that many parents were
finding – I thought “this is where I can make a difference.” We had kiddos with autism – kiddos on the spectrum, kids with behavior issues . . . I always wondered – and would quietly question, “was this(or that) due to undiagnosed celiac? – or gluten intolerance?” And then one day that first year, a parent told us her child was getting tested for celiac. Whoo – hooo! I just knew that was ‘my purpose’ – to be there to help and guide and support, blah, blah, blah.
But no – mom came back and said the doctor told her only one of the tests was positive – “you don’t need to put her on the gluten free diet.” What????!!!!! Oh yes – I cried. My hands were tied – and I didn’t have the confidence, experience, or ‘title’ (for lack of a better word) to have any kind of pull or say.
Yes – I’ve seen lots of kiddos who expressed symptoms of one kind or another. But – I also “see”celiac a lot - everywhere. Many of us who have been down this road (of years being undiagnosed – then feeling the incredible changes once gluten free) often do “see” celiac a lot - Maybe not always correctly – but being aware seems to create a special kind of 3D celiac glasses – (of sorts).
But the kids. It makes me so sad when kids suffer so needlessly. Education in med school was (and probably continues to be) lacking. But its getting better! Much better.
Testing definitely continues to be lacking. Even parents who want their children tested sometimes have to be forceful with their requests.
And then – even after being diagnosed – parents often have the struggle of family members just not “getting it”. After all – symptoms aren’t immediate (usually) – to suggest that “yes!
That cookie you gave my child HURT him!” School lunches, birthday parites, classroom celebrations - and on and on..... Its a challenge. Kids are at the mercy of the adults in charge. And sometimes even some parents “don’t want to know” because they don’t want the ‘inconvenience’that goes with a special diet.
Kids –they need us to stand up for them!!
In blogs to follow I will share some stories from parents about their kids who have struggled because of a lack of proper diagnosis –symptoms that aren’t the ‘typical’ red flags of diarrhea, weight loss, and protruding belly, etc.
The first two topics will be ‘behavior’ and ‘poop’ – or should I say – the struggle to poop.
I will share stories directly from the experiences that parents share with me. If you have something to share – please email me at firstname.lastname@example.org or join our conversation on the FaceBook page. I’d be happy to email you the section that relates to your story before I post the blog, if you wish. Include only information I can share (first names at least – last names if you wish – and a general area of this world where you live.)
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Adam's Gluten Free