The gluten free/casein free diet literally changed Will’s life for the better. If I had not seen the difference in Will with my own eyes I would have never believed that diet can have such a large effect! We heard about the gfcf diet a year before we tried it. We thought it was silly. But after Will turned down candy to suck on a piece of whole wheat bread we knew we needed to investigate potential allergies and sensitivities. We did an IgG test and he came up allergic to gluten and casein among other things. We removed them from his diet. Fortunately, we tested him before we started because nothing changed for two months and I would have stopped the diet if we didn’t have the test results.
Before starting the diet Will was skinny, had eczema, red cheeks, dark circles and genital itch. He constantly circled, jumped and stimmed. He stimmed with his fingers in his peripheral vision. He constantly sucked his tongue or bottom lip. He carried a crumb in the bent first finger of both hands and used the remaining fingers to eat, etc. He went to bed at 11:00 at the earliest and woke up at 3:30am. He had night laughter and developed chronic diarrhea. He wanted to watch TV all the time and disturbingly had just started trying to watch TV upside down. But his worst symptom was the constant keening in pain. Unfortunately, because he was non-verbal I didn’t know he was in pain. He watched TV all day and that was the only time he didn’t keen. I don’t know how to describe the sound. It wasn’t a scream just a constant high pitched “e” sound. He made his high-pitched pain noise for a year and tried to distract himself by watching TV. I tried playing with him to stop the noise but nothing I did stopped it. I gave up and let him watch TV to stop the sound. He would happily sit in his high chair for hours sucking on a piece of bread. He was in a constant haze. His therapist said he went to a “happy place.”
Will had started ABA before he was two and before he was even formally diagnosed. He didn’t maintain any skills. He was severely impaired. He had 26 hours a week of ABA for nine months without making any progress plus a weekly visit with a child educator and SLP.
After the first two months, overnight Will became a different child. He started sleeping until 7:00am rather than waking up at 3:30am. He stopped jumping, toe walking, and circling. He stopped constantly watching TV. His stimming decreased by two thirds. He stopped sucking his tongue and lip. He stopped touching his penis. He stopped keening. His peripheral vision stims disappeared. He wasn’t hazy anymore he was available. He started mastering and maintaining knowledge. He started making developmental gains. He had three ABA therapists, an early childhood educator, and a SLP. We all agreed that the diet had caused this tremendous change. In fact, the BCBA still uses Will as an example that the diet is very effective for some children.
The effectiveness of the diet was reinforced when Will ate wheat, because he would wake up at 3:30 (and still does) and his stims increased. He gets red cheeks from casein. A couple years after being on the diet his pediatric gastroenterologist recommended we test Will for celiac; we put Will back on gluten and casein. For two months he didn’t have many symptoms and I thought he had outgrown his allergy. I was willing to over look some symptoms for increased quality of life. Unfortunately, after two months he became incredibly stimmy and was waking up at 3:30am every morning. He developed a new stim of banging his knuckles on tables and his knuckles had massive calluses that looked like huge warts. Basically after two months Will was almost back to where he was at two. It took another two months to work the gluten and casein out of his system. The knuckle banging did not completely go away but he doesn’t do it enough to have calluses anymore.
After I put Will on the gfcf diet a friend recommended that I read Is This Your Child by Doris Rapp. It was a revelation for me. As I read it I discovered symptoms that I thought were autism weren’t. They were allergy reactions.
We also put Will on the Specific Carbohydrate Diet. It is hard to combine this diet with GFCF because the one nice thing about the SCD is being able to eat cheese. Will’s teacher felt the SCD improved Will’s functioning at school but I didn’t see much improvement at home. I took him off that diet because I didn’t feel the quality of life he was sacrificing was worth the gains. Though, I understand for some children it is more effective than the gf/cf diet.
I recommend every parent try the gfcf diet for at least two months, probably four. It is an easy, if expensive, way to potentially improve functioning, sleeping and decrease maladaptive behaviors. Diet isn’t a problem for everyone with autism but it is for some particularly those with GI issues.
Before starting this diet I recommend that you: 1. Test for celiac disease, opiate peptides, allergies and food sensitivities (IgG). 2. Understand the diet. Know what contains gluten and casein and completely eliminate them. Sometimes food is not labeled so always err on the side of caution.
Before starting the diet read Special Diets for Special Kids by Lisa Lewis. She explains the theory behind the diet. Her website is http://www.autismndi.com/
Sources:
Special Diets for Special Kids vols. 1 & 2
The Kid Friendly ADHD & Autism Cookbook: This has a nice overview of different diets and food reactions.
For information about the Specific Carbohydrate Diet check out:
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