Wednesday, July 9, 2014

Why We Went Gluten Free

That may be misleading.....WE did not all go Gluten Free But, my son with Autism did.  Now before you jump to any conclusions.....let me explain.

It seems to be a common theme in my life that anything I have been strongly opposed to.....God places squarely on my lap.  Decide you don't want to be a special Ed teacher....get a son with ASD, Say you hate Suffolk county and would never live there...marry a man from Suffolk county and briefly live there, Make fun of the house that looked too "dark" because it was dark gray with black shutter..... will end up living in said house in the next year......sooooo

When Frankie was diagnosed with Autism, the FIRST thing I said was.....there is no way I'm doing those crazy diets, this kid loves bread and I'm not taking that from him.  We had already established that dairy did a number on his stomach so along with some metabolic blood work our doctor decided he would run an entire blood work up....allergies, titers, EVERYTHING.  2 trips to the North shore Labs and 19 viles of blood later I got the call.  My son had come up with a heterozygous MTHFR gene mutation (common among children with autism) and.....he came up VERY positive on 3 out of 4 markers for Celiacs and almost over average on the 4th.  So there I had it, I swore up and down I wasn't going to try that Fad diet thing and 6 months later i was slapped with a diagnosis of Celiacs. 

We later met with a pediatric gastroentorologist who did a endoscopy on him.  Since he was 3 we were lucky he did not have any intestinal damage BUT here was the conflicting issue.  I had the Gastro tell me I had two keep him on his diet and rescope him until he has a positive intestinal biopsy or just go Gluten Free.  Gastro suggested to just go Gluten Free since the blood work doesn't lie, his body WAS in fact producing antibodies against the Gluten proteins.  At the same time the pediatrician was saying if the biopsy was negative to just continue on his regular diet. 

I regretfully just kept feeding him was easy and our Pediatrician ok'd it.  Well after a year....yes, my dumb ass waited a year, I made the decision to go Gluten Free without the positive intestine biopsy.   His behaviors were off the wall, it was my last resort.  So in March of 2013 Frankie went Gluten Free.  In the next few months his behaviors were FINALLY more manageable and his poop was FINALLY normal (who knew?)  We had 2 slip ups though.  On 2 occasions he has Gluten from breaded chicken.......and like clock work 8 hours later i had a child vomiting all over the place.....I didn't need a positive biopsy, that was enough. 

He's been Gluten Free for over a year now.  He knows 100% what he can and can not eat.  He is so scarred from those 2 vomiting incidents that in a  room full of kids eating cookies he doesn't even get jealous, he rather eat nothing then get sick. 

So, That is our story of Gluten.  As of a couple months ago I'm starting to be concerned about my youngest with the Gluten also.  He's showing some similar issues (minus the autism)in regards to tummy pain, it may just be teeth but I'm monitoring it.  :)