GFCF diet

My 4 yo daughter has been on the Gluten Free and Casein Free diet for almost a year now. Actually to call her GFCF doesn't really scratch the surface. She is really free of gluten (protein found in wheat, barley, rye and depsending on who you ask, oats), casein (the protein found in dairy products, corn (yes all corn included the ever present corn syrup), eggs, soy, nitrites, nitrates, artificial colors, artificial flavors, MSG and bananas. I also have to limit the amounts of phenols that she gets. This includes apples, berries, tomatoes - all her favorites. This has been one of the hardest interventions that I have put in place for her - but I also want to say that it has been one of the most worthwhile.


In Oct of 2006, right around when Charlie was turning three, I found some information on the GFCF diet and thought that it might be worth it to try it. But the more I read the more I was afraid of it. Just thinking about taking out these things from her diet made me nervous. At the time she was subsisting mainly on a diet of goldfish crackers, chicken nuggets, saltines, etc - all loaded with gluten. I talked to her new pediatrician and he told me "please don't do this." I was still not convinced and started looking for gluten free products in my local health food stores.

To say that these items were not met with great happiness in my home is an understatement. No one liked them. My husband thought I was crazy. And the more I realized how hard this was going to be the more I thought that this was one thing that I was not going to try. I gave up and went on with other things.

Then in March of 2007 the diet started popping up again. I came across a book I had gotten in October, “Special Diets for Special Kids” by Lisa Lewis. I sat down and actually finished it this time. Then I found “Unraveling the Mystery of Autism and Pervasive Developmental Disorder” by Karen Seroussi. After reading these two books I was feeling like this was something that I SHOULD try. I kept thinking that the worst that could happen was that it wouldn’t work and we would go back to eating the way we did before. The best case scenario was that we would see some, any, results!

Then during spring break I noticed that Charlie seemed to be regressing more. She was not interested in any contact with anyone. We had set up a tent in the living room for a sleepover that Genevieve, Charlie’s sister had with her cousin and Charlie would not come out. She also would not let anyone in. Then she started the screaming. That wonderful sound that we refer to around here as the “ice pick”. I noticed that she was eating more corn chips than usual at that time. I knew that popcorn was an issue for her b/c when she ate it she would scream for hours and her diapers were awful. She would get the most horrible diaper rashes I had ever seen. Her skin was literally eaten through. I would load her up on ibuprophen and infants gas drops after she had gotten some popcorn and promise myself and her that she would never get any of that again. I finally put two and two together and decided that when gluten and casein went so would corn.

The more I considered it the more information seemed to fall into my lap. Every book that I picked up on Autism mentioned this diet. I walked into a group therapy session with Charlie and one of the other mothers and a therapist were discussing it! It was everywhere around me. God was saying to me “How long are you going to hold out when it is right here in front of you?” Sold. I thought about the things that they had talked about in these books and couldn’t find any reason not to try. I was not really looking forward to it but I knew it was time.

I started taking out things that contained gluten in April of 2007 and replacing them with gluten free items. Charlie was not interested in most of them. It took a lot of time (up to 10 months!) for her to try certain things. Mostly in the beginning we got by with fruit. I was lucky that fruit was something she almost always wanted. Meals were meats and vegetables with rice or potatoes or rice pasta. I also found some cookies that she would eat. Enjoy Life brand saved my life!

Those early days were so hard. I remember a time when I sat down and cried over ketchup! There were so many times that I felt like giving up. But I am glad that we didn’t. Over time I noticed more eye contact, more language, more interaction and most of all - - LESS SCREAMING!!!!!!! Hallelujah! My baby wasn’t hurting as much anymore and she was happier for it. She was able to do so many of the things that she wsan’t able to do before. We could play together, she was enjoying her time in therapy even more and over all our house was a happier place. But everyone has noticed the difference in her.

It took so much time to learn how to track down the ingredients that were affecting her. Even now, almost a year later, I am still finding things that are offending her. But every second has been worth it. I would not go back to how things were for anything in the world. I have tried may interventions for Charlie and this diet is definitely one of the top two things that have helped her.