Celiac Disease – AKA Another reason for being absent

My child was anemic at the time of his third year check up.  He had all the hallmark signs of the iron deficiency- pale, lethargic, dark circles under the eyes, quick to get sick…  Much like I had at the same age.  An iron supplement brought him up into the barely there normal range and so further bloodwork was done.  Results indicated a certain level of inflammatory markers, and another still of  something that would indicate this disease.  We were referred to a specialist with the knowledge the only way to definitively diagnose Celiac Disease is through a small intestine biopsy; we declined.

In fact, we ignored the diagnosis.

Instead we took dairy out of his diet completely, another recommendation from the doctor, thinking that his love of the stuff was inhibiting his ability to get the range of nutrients he needed.  I bought vitamins with iron in them again and encouraged my son he needed to eat them; the ocean animals imprinted on their multicolored chalky surface convinced him.  In conjunction with this new plan of attack Vitamin C was increased in hopes it would boost the iron absorption.  He was still pale.  We started giving him probiotics in his juice or water.  His gut was still bloated – the sound of fermentation prevalent when you tapped it; his face appearing somewhat gaunt.  Months went by and we became more rigid about his meal schedule, bribing him unsuccessfully to eat his vegetables.  He could sit in a chair for hours with no interest in his legos or in talking.  When he was upset he became uncontrollable and violent.

And now here we are.  For the first time in my life I’m finding I have to read all food labels.  Everything on the shelves is suspect.  The not so good for you cookies I make for Christmas, sugar being my only prior concern, can not have flour in them for fear of my son wanting to eat one or, heaven help me, sneak one.  Going to a restaurant is something we have not even attempted as yet.  All his favorites are things he can not order.

I have given away several boxes of pasta, a bag of bread flour, a frozen Bertioli entree.  Crackers, which I can eat and are my son’s favorite, are hidden away in the pantry to be partaken of after he’s in bed; I eat them with cunning and strategy.  Sandwich bread has been tossed, chicken noodle soup put in the back of the cabinets for after hours munching, and the bag and container of all purpose flour are languishing as I contemplate what to do with them.  And then I looked at the multivitamin with iron in it.  Contains wheat, the label said, and so it was tossed into the trash when my son wasn’t looking.  As one would expect of poison, for that is what gluten is for my son, it was clever, quiet, and insidious.  It’s destructive capabilities being proven day in and day out by my complicit denial.  We were starving him with food.

There are no excuses for this.  None which even I can think of as reasonable.  For, truly, is there any reason one could give that would make you accept the destruction of their child from the inside out?  The justicar that I am has me screaming that there is nothing that would work for myself.  Oh, don’t get me wrong the brutality and high handedness of the physician and his staff, as well as their unwillingness to talk to us seriously about their reasons for all they did, left my husband and I completely distrusting everything they had asserted.  In the manner of futile wishes that is probably my largest one at this moment.  Not for my child to be absent this disease, as denial is certainly no longer my cup of tea, but for those we rely upon for sound advice in the most valuable aspect of life to operate without assumptions, particularly the one that renders them as completely superior.  All evidence to their assertions of diagnosis need to be presented.  Coercing the person before them should not be an option; reason and proof for the recommendations are the only ones that should be considered.  Show people they have good reason to trust.  There is no shortage of shame I have in myself for allowing this to waylay time my son could have been healthy; and no shortage of resentment in the professionals that act as thugs instead of experts who could be trusted.

Regardless of all this, I still had to throw out my soy sauce (gluten-free tamari now sits in its place), and am, even now, contemplating a new flour mixture for a pancake or waffle he might like because within one week of throwing gluten to the curb like the unwanted parasite she was my son’s color has returned, his attention span expanded, and the mood swings non-existent.  I have my son back.  The four different flours it took to make him chocolate chip cookies were well worth it.


2 responses to “Celiac Disease – AKA Another reason for being absent

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