Through all my research and my interactions with other autism mommies, I learned about the gluten-free casein-free (GFCF) diet, and how it really seemed to alleviate the symptoms of autism in many children. Of course this caught my attention.
The theory is this, in a nutshell: these children are unable to digest foods properly due to inflammation in the gut. Food particles seep through the gut to the bloodstream (“leaky gut”). The gut and the brain are connected (there actually is documentation of a brain-gut connection, not physical but relational), and if there is inflammation in the gut, there is inflammation in the brain. An inflamed brain can’t work to its highest potential. The physical manifestation of all this in the brain is “spacy-ness” and in the gut, well you get either diarrhea or constipation. This is a very brief and quite incomplete explanation, but I’ve at least laid the groundwork.
Thomas did not have the gut issues. But spacy-ness? We couldn’t rule that out and we didn’t want to leave any stone unturned, so we tried it. Over $700 out of pocket in lab work and at least that many vials of blood later, the results said that he was not allergic but was reactive to gluten (wheat protein), casein (milk protein), eggs, and a plethora of other foods. We started the GFCF diet.
Before I describe the next eleven months, I must say this: for those of you that know me, I am a Rule Follower. So if I do something like this, I DO it.
Casein was supposed to be out of the system within days; gluten could take months. Six weeks later we saw no improvement. In fact, the GFCF gave him diarrhea. So the next medical advice: go stricter. On to the Specific Carbohydrate Diet (SCD); no grains, rice, potatoes, sugars, most dairy…and because he reacted to eggs, those were out too. He could eat meat, fruit, vegetables and nuts. Bowel movements still were just wrong, and in the meantime, he was starting to look a little gaunt. No improvement in spacy-ness for him either.
The months dragged on as we tried more and more restrictions, even to the point that I was attempting to brew my own goat milk yogurt in the oven overnight. That was the closest I had ever been to a panic attack or nervous breakdown. No seeming benefits, no results…and then he got hold of a piece of wheat bread - ate the whole thing when my back was turned. I was about to panic – months of work down the drain! I had read that one bit of gluten can cause major regression and I was despondent. And yet…no change, no reaction – he was fine.
After a few more months (yes, MONTHS) of me stubbornly not wanting to give up on something I had worked so hard on for so long, we finally started re-introducing foods into his diet. And slowly, the color came back in his face and he filled out a bit. He looked like a healthy kid. So after eleven months, our journey with “the autism diet” came to a close. And he could have his Goldfish crackers again.
I will close this long post by saying that these diets have worked for many kids. It just didn’t for Thomas at this point.
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