For many children, the GFCF diet works wonders: 11.5% of parents surveyed by the GFCF Diet Support Group reported "dramatic" results after more than a year on the diet, while another 29.5% called their child's improvement "excellent."
But some parents say their child's behavior seems to ebb and flow on the GFCF diet, while others say the diet doesn't seem to improve their child's behavior at all, but the child gets even worse if she consumes any gluten or casein.
Potential Culprits Cause Autism Symptoms
Part of the problem is that the GFCF diet must be followed strictly, with absolutely no cheating, for children to continue to improve. The effects of gluten consumption in particular can last more than a week for some people, so if a child on the GFCF diet cheats, or accidentally consumes gluten or casein once a week, it's almost as if she wasn't following the diet at all.
Another problem could be inadvertent cross-contamination from non-GFCF foods. Because the gluten-free, casein-free diet can be expensive and difficult to follow, most parents place only their autistic child on the diet while the rest of the family continues to consume conventional foods.
In this case, it can be more difficult than expected to prevent the GFCF meals from getting tiny amounts of gluten and casein in them; something as simple as using the same spatula to transfer both types of food to plates, or even cooking GFCF food where another pan can splatter into it, can ruin a parent's efforts at keeping the autistic member of the family GFCF.
"Gluten-Free" Foods Contain Tiny Amount of Gluten
Of course, cross-contamination is a problem far outside the family kitchen, in commercial food production. Many parents of autistic children have turned eagerly to the flood of new foods labeled "gluten-free." But almost all these foods still have a small amount of gluten in them.
The U.S. Food and Drug Administration has proposed allowing foods with less than 20 parts per million of gluten in them to be labeled "gluten-free." This may seem like an insignificant amount of gluten, but for someone who is super-sensitive to the protein, it's enough to cause a major reaction. There are no standards for calling something casein-free. Grain-based products, such as GFCF baked goods and mixes, are a particular problem, but everything, even supplements, potentially can be contaminated, especially with gluten, which is more pervasive than casein.
Given all of this, parents may believe their child is maintaining a strict gluten-free, casein-free diet to treat autism, when in reality that child still is consuming enough gluten and casein to cause autistic behavior.
What Can Parents Do For Autistic Child?
The first step recommended by diet experts is to keep a diet log in an effort to associate autism symptoms with consumption of particular foods. For example, if a child routinely gets particularly hyper or aggressive within a few hours of lunch, parents should look closely at the foods that child ate at lunch to see if there's any potential for cross-contamination.
Since many autistic children eat the same foods over and over, links between foods and behavior sometimes can be easy to spot. If parents identify a food that appears to be problematic (even if the food appears to be GFCF-safe), they can eliminate it for a few days to see if the child's behavior improves, and then reintroduce it to see if the child reacts.
Unfortunately, many autistic children on the GFCF diet appear to react to many or all other grains, especially soy and corn. It's not clear whether they're reacting to those grains, or if they're reacting to the gluten contamination in the grain products; soy products, especially, often contain significant gluten contamination, even if the label states the product is "gluten-free."
Try Another Diet to Treat Autism
Sometimes, the only way to help these children is to eliminate all grains from their diets. Parents who implement the Paleo Diet or the Specific Carbohydrate Diet for their autistic children report those diets are very effective in improving autism symptoms.
And, children who make great progress initially on the GFCF diet but then appear to plateau may need to get stricter with their diet. This can mean implementing some form of grain-free diet for the autistic child, placing the entire family on the GFCF diet to cut down on cross-contamination risk, or both.
None of this is easy, and many parents feel these steps are too extreme. But implementing what seem like extreme measures has helped recover some children completely from autism.
Jane Anderson - Jane M. Anderson spends as much time as possible on the water, working and sailing on boats. She grew up sailing Sunfish and Rhodes 19s on ...
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