Autism and diet:
Eleven years of experience with the gluten- and caseine free diet
These pages have been written to inform parents and professionals about a specific treatment option for autistic persons. The gluten free and casein free (GFCF) diet is relatively well known today, but there are still many people who haven't tested it for any length of time.
I have used this diet for my son for eleven years, and want to share the experience with other parents.
2 Briefly, about our experience
When my son was 18 months old, he started to slip away from us. He was diagnosed with a "brain disorder;" later he got the "autistic" label. Those of you who have been through the same process know what we went through.
At a certain stage, we stopped wondering if something was wrong with our child, and started looking for what we could do for him. We stopped being afraid that he might be an idiot, and started marvelling at the way the little chap was, in his own way, struggling along with his enormous problem.
When he was eight years old, we heard about the GFCF diet. We're lucky to live in Norway, close to one of the foremost research centres in the world, and to Dr. Karl Ludvig Reichelt, who was the first to verify, through chemical analysis, part of the biochemical foundation that underlies the GFCF diet treatment.
Dr. Reichelt impressed us enormously because he had an eye for all the little puzzle pieces that were not part of the standard picture of "autism," but which nevertheless contributed to making our child different from other children. Dr. Reichelt very obviously knew more about this kind of problem than other people, and we decided to try his suggestions.
After a short trial period, we've never looked back without shuddering at the idea of what would have happened if we hadn't met Dr. Reichelt. We've never got "back" the son we hoped for initially: he'll never be able to make up for all that he lost during his first eight years. But his entire life has taken on a new direction. He's able to learn again. He has learnt to speak. He plays with other children. He's become toilet trained. He had developed a strong sense of humour and a genuine attachment to us. He means something for us, and we mean something for him. We're connected.
1.3 Briefly about the scientific state of affair.
The positive effect of the GFCF diet is rapidly gaining acceptance in the medical community, mostly due to the fact that thousands of families have reported mild to dramatic improvements. There are several studies that support the hypothesis, but there have been no repeated doubleblind crossover experiments of the type that are generally accepted as scientific proof.
That kind of proof isn't likely to appear in the next few years, either. The experiment would be costly and very time-consuming, and the treatment is relatively simple, cheap, and available without a prescription. Nobody is going to make money out of it, and therefore too little research is likely to go into it.
The GFCF support group at www.gfcfdiet.com has recently started a research project that may help to provide some answers about which autistic children are most likely to respond to this intervention. I strongly encourage everybody to share their diet experience through this project, for statistical analysis If you're willing to do this, here is a link to www.gfcfdietsurvey.org
1.4 It's a question of what chances one is willing to take.
Imagine that you're standing on a quay. Your child is about to drown (develop autism) just out of reach, five yards away. You have a line (treatment option) in your hand, but somebody (a doctor) tells you not to throw it, because it has still not been proven that the line is thick and strong enough.
Any normal parent won't wait for final proof before he or she throws the line or life vest or whatever is offering a potential benefit to the drowning victim. And any normal parent of a child caught in the vicious circle of autistic development, will not wait for final proof either, but will readily try any treatment option that is available, as long as it isn't too dangerous, or too complicated, or excludes other treatment options.
As parents of autistic children, we don't need scientifically tested hawsers. We'll throw our children any piece of string or straw that offers hope. The GFCF diet is such an option. Our experience tells us that it will work for some. We believe that it will work for many. It is likely to work better the earlier you start.
I sincerely hope that what I've written above will help some people to make up their minds about trying the GFCF diet for their children.
* It's harmless
* It's a cheap and immediate approach
* It's fully compatible with most other interventions
I want as many as possible of the world's autistic children to have the chance that my son got when he was eight.
I also want as many of them as possible to get the chance that he didn't get when he was two.
Best luck to you all !
Other sources of information about the GFCF diet: