We were at our wits' end a year and a half ago. Owen had quit eating any and all solid food and his pediatrician had put him on Pediasure as a meal replacement. His body was covered in eczema and he had dark circles under his eyes. Will was a crazy man. His hyperactivity was at an all-time high, he hadn't slept through the night since he was born, his tantrums were out of this world and his focus was non-existent. We had been going through a few months of trialing meds and were currently using Ritalin (which I hated with every fibre of my being, not to mention how he must have felt on it). Will had an absolute addiction to carbs and had since he was born, and Owen could survive entirely on milk. Both boys would often get flaming red cheeks and ears following different foods, though we could never pinpoint the cause.
We thought we would try the diet and see what would happen. For Owen, we switched from Pediasure (dairy-based) to a rice-based meal replacement ($$$). Within a couple of days we saw the physical changes in his body; the eczema cleared up and so did the dark circles. He became sharper and more alert, losing the autistic "fog" he seemed to have (lost in his own world). Will became a different kid, or shall I say the best version of himself. Within two days we realized he had to be immediately taken off Ritalin. The hyperactivity disappeared; he sat beside us on the couch to watch tv- he had never sat to do anything before! (leisure-related). He slept through the night. The second night, the third night.. and we never looked back. He virtually toilet trained himself within the next month. He laughed. He started talking.
Did I ever tell you the story of my random dinner with the unforgettable Temple Grandin?
I'll have to save the story for another day, but I will say that it was, for me, like hanging out with Ghandi. She is brilliant. This woman holds a PhD and what I found so interesting, was her response when I asked her what she thought about the Gluten/Casein-Free Diet for people with autism. She told me that when science cannot support a method of treatment or intervention, she launches into her own interview with parents that she's met all over the world at various autism conferences and such. If she can find three people who can satisfy her science brain by answering her very tough questions, then she's convinced it's worth a try. As far as GFCF is concerned, she says she's interviewed hundreds who have succeeded. "It can't do any harm to try and I think it would be stupid not to". Her words, not mine.
I stumbled across a wonderful blog called Pray for Nathan Dorje. Nathan was born with a genetic mutation that caused a brain malformation called severe holoprosencephaly and was later diagnosed additionally with hydrocephalus. It wasn't expected that Nathan would survive, and if he did, he would likely be a vegetable and not have a meaningful life. A few years later and Nathan has so far proved them wrong, though he still faces many challenges. His prognosis is currently uncertain, but in the meantime, his family rejoices in their little boy and they blog to share his story.
His mother, Marcela posted her explanation of the GFCF Diet. I thought it was a wonderfully concise summary of what I could not explain myself.
This is a very extensive topic and requires a lot of education so I thought maybe I’d share a little bit about how we came to understand the relationship between health, development, and diet.
About a year ago I picked up Jenny McCartney’s book about her autistic son. She talks about curing autism with diet and she made clear correlations between the gut and the brain. I’ll try to simplify, but in a nutshell, the proteins in milk and wheat are quite large. When the milk/wheat is digested, it breaks down into smaller components, and the peptides that you get for them are very large. These large peptides have a tendency to perforate tiny holes in the intestines, causing something called “leaky gut”. Through these tiny holes, toxins, peptides, and other elements escape into the bloodstream. The immune system sees them as “offenders” as they are ‘out of context’ – they’re supposed to be in the digestive tract, not floating around in the blood stream. So the immunoglobulins (IgG) attack those substances, causing an allergic reaction. This allergic reaction releases histamine, which is a neurotransmitter that prevents the creation of other neurotransmitters including dopamine and serotonin, which are essential for proper brain development.
Another thing that happens is some of those peptides travel to the brain and in the brain they function like an opiate (like the drug opium) causing a hazy, foggy feeling that prevents proper brain processing and interaction (like being drugged).
Also, if there is constant inflammation, the immune system is always in overdrive, which in and of itself has serious consequences. Eventually they become immuno-suppresed, which leads to other problems.
Also, substances like milk and wheat feed fungus like candida, which releases a nasty toxin into the bloodstream.
I am trying to keep it simple so in a nutshell, wheat and milk are very difficult to process, even for healthy people, and can wreak havoc on children that already have compromised central nervous systems.
There are many books / studies talking about the connection between the gut and the brain. Without a heatlhy gut the brain is functioning at a much lower rate. That was my next step. Even though Nathan has CP, not autism, I made the connection between “compromised nervous system” and gut and a light went off in my head.
In the autism world they recommend the Gluten Free Casein Free Diet (free of milk and wheat). That seemed like my next logical step as they see miraculous recoveries in children with autism using this diet. Even though the symptoms in autism and CP are quite different, they are both CNS disorders so I figured that it was a good connection.
We went cold turkey. One day Nathan was eating cheese, chocolate, milk, and whatever we wanted. The next day he couldn’t have any of it. He had a rough couple of days but we stuck to it and on his 4th day he was okay with the new diet.
We cook everything from scratch. We don’t use anything with preservatives, or anything that may contain hidden traces of milk or wheat. Breakfast tends to be GFCF cereal (with rice milk) or GFCF pancakes (these are sold pre-mixed at health food stores). Lunch is usually vegetables, a grain like brown rice, quinoa, or millet, and a protein (fish, chicken or beef). We buy everything organic for him. Dinner is usually something similar to lunch. He gets 2 snacks which are usually fruit, or carrots, or millet with avocado, or rice cakes, or oatmeal. Nathan can’t chew well so everything is pureed.
The first 3 months were tough because he was detoxing. He was sick a lot. But then we added some of the same supplements used in the autism world (B vitamins, multi-vitamins, etc) and his immune system recovered. Starting Feb 09, Nathan has only been sick twice for a couple of days, he has much more energy, he is more connected, he understands more, he is trying to do new things, he looks rosy and radiates health, he is stronger. Just a couple of weeks ago I was able to see the true power of the diet. We had to break the diet because we are in a foreign country and it took us a little while to figure things out. So for 2 days he was allowed milk and wheat. On the 3rd day Nathan was pale, spacey, very low energy, and irritable. I could see instantly the poor effect these foods had in him. We want back to the diet and after 4 days of detoxing he was back to being connected, healthy, and happy again.
I cannot recommend cutting out milk and wheat enough, our kids have enough going on and don’t need more obstacles to their development.
If you are interested in hearing more about the controversy, here is a decent article that sums it up nicely: CLICK HERE.
Three to four months ago, we re-introduced dairy back in to Will's diet and have seen no negative effects. If Will even takes a nibble of wheat-bread crust, we immediately get a crazy person back in our home. Every moment of this experience has been worth it to have the kids I have today. I believe they feel better, therefor they are happier. I wish any other parents trying to figure it out, the best of luck.