Whenever I see him chugging his milk like a frat boy chugs beer, I can’t help but wonder if I should’ve have stuck to the GF/CF diet. Is milk doing his little body good? Or is it holding him back from further development? [According to one theory, some people with autism spectrum disorders cannot properly digest gluten and casein, which form peptides, or substances that act like opiates in their bodies. The peptides then alter the person's behavior, perceptions, and responses to his environment. Some scientists now believe that peptides trigger an unusual immune system response in certain people.]
A few weeks after his original diagnosis (May 2008), I decided to try the diet. I went through my kitchen cabinets, cleaned out my refrigerator and went on a food shopping spree. Do you know what food products contain Casein or Gluten? EVERYTHING!
I read the nutrition labels of packages and opted for organic and all natural ingredients. So I replaced regular milk with Almond, Soy, Rice & Hemp – unsure of which The Boy would prefer. I purchased Tofutti (dairy free) ice cream and Gluten Free cereals. And eliminated a staple from his diet: The Peanut Butter and Jelly Sandwich.
Starting the diet was expensive – do you know how much a tiny carton of almond or rice milk costs? And living in the Bronx , GF/CF products were not only harder to find but more expensive. (Though, now as my neighborhood is becoming gentrified - there are more GF/CF options.) So I found myself food shopping in the city during my lunch hour and lugging bags home on my way home from work.
I wish I could say that starting the diet was the hardest part. But have you ever tried convincing an old school Puerto Rican grandmother that milk/milk products and bread needs to be eliminated from a child’s diet?
My mother and I disagree on a lot of things – almost everything. But this decision made Carmen crazy. (I often refer to my mother as Carmen, though not to her face – I’ll get slapped.)
“What do you mean no milk and bread? He needs his milk. You are taking away all the things he loves!” She yelled.
“He’s two Mother. He doesn’t know what he loves.”
“Hmpf…we’ll see.” And I knew this meant that when he was with Abuela, she would give him whatever he wanted – gluten free/casein free or not.
At the time, no one was supportive of my decision of going GF/CF. Not our pediatrician, not the ABA therapist, not my mother, some friends.
So after a few months of doing it (kind of half-ass), I gave up. He was making strides with the Early Intervention therapists and was about to start a center based program. And I didn’t know if his improvement was due to the therapy or the diet. So we went back to milk, ice cream and gluten filled cake. And secretly, since quitting I’ve carried this guilt around, feeling like a mother failure.
Like all else Autism – there is so much debate and nothing truly conclusive. Ask five different moms/doctors/therapists and you’ll get five different answers. So what is a mom to do? Give it another go? I know that if I decide to try it again, I need to give a full six months and document the results. And now that he's older and knows exactly what he likes and doesn't like - it will be so much harder. Am I ready for that? Am I selfish for not willing to commit and try again?
Would love to hear your thoughts/stories on living GF/CF!
