We are really just starting to see the first major wave of adults with autism come through today. Many of them aren’t currently on and/or were not on specialized diets growing up and because of funding allocations for research, we don’t have a lot of actual data to answer this specifically regarding children on the spectrum and/or who have other neurodevelopmental disorders.
My guess though is that for some it may be temporary, but for most, it’s likely going to be something they follow for years, possibly lifelong. Especially in regards to gluten elimination. It’s very child dependent based on where they’re starting, what they’ve been eating, and what they eat while on the GFCF diet. How much “gut healing” has taken place? Has their immune system and nervous system settled and regulated? There are a lot of variables to consider for each bioindividual child.
Here’s the thing, GFCF is really just the tip of the iceberg. Many of these children need a bio-individualized diet tailored to them far beyond GFCF. If a remarkable amount of biochemical healing and improvement occurs, especially in the gut, then perhaps these children could grow into teens or adults who could occasionally tolerate gluten and/or casein containing foods in moderation.
Everyone is different and we’re still learning so much about the intricate impacts of diet, nutrition, and supplementation as a scientific and medical community.
Oftentimes, once gluten and casein are removed then you can really see the other foods that were triggering them as well. For example, red apples or tomatoes may not have been an obvious issue before, but after being GFCF for some time you may start to think they’ve developed new sensitivities. It may not necessarily be that the sensitivities are new, it may be that they were hidden. Masked food sensitivity symptoms beneath the gluten and casein reactions.
From what I have gathered, it seems some children are able to tolerate casein occasionally (in certain forms) after working on their gut healing and food intolerances for an extended period of time. Ex: Goat’s milk and camel’s milk are easier to digest than cow's milk, and raw cow’s milk is more digestible than pasteurized cow’s milk.
It will depend on their individual reasons why gluten and casein molecules caused challenges for them initially, and how this was followed up.
I would be interested to see more long term testimonials and higher level research on GFCF diets. From the research I’ve personally read and the work I’ve done with clients, I would advise families to expect that gluten likely needs to remain out of the diet for a long time.
Going back to those inevitable “oops moments” of diet infractions, parents are able to see how these foods are causing them to react (or no longer react). Sometimes it’s very obvious they aren’t able to tolerate it still, and the diet is worth continuing. Sometimes the child, if they’re old enough and able to understand, is also able to connect the food intolerance/sensitivity symptoms.
I don’t want to be too “all or nothing” though. Diet is always very bioindividual, I just don’t want to give a false hope either that after a year or two your child will be able to eat gluten and casein without an issue... Unfortunately that hasn’t been the experience I’ve seen, but I would confidently say all of my clients would tell you that it’s worth it!
How long should it take to see results?
Generally speaking, most of my clients see beginning results within the first 2-3 weeks.
Some parents may see some progress at about a week or so, but it depends if you’re starting with gluten, or with casein, or with both at the same time, and how exactly you make the transition.
Keeping in mind that, “Sometimes things get worse before they get better”. If a child has strong addictive like cravings to gluten and casein, you may see very strong willed behaviors from your child as they initially adjust.
Parents have reported statements along the lines of, “After [that initial adjustment stage], it’s like a light turned on / a fog cleared up / a veil was lifted.” It’s impeccably rewarding to be a part of helping parents attain such progress, and create these changes for their child’s health and development.
Give the complete healthy gluten and casein free diet (and soy free if possible), at least 6 months with zero “oops moments”.
If there is an “oops moment”, make a note and do a mental reset of the diet. Or maybe not a full reset, depending how long your child has been on it and how much gluten or casein they ate, and what their reactions were. At the very least make note of it. And then start again.
Gluten and dairy free diets are foundational to most special diets focused on improving the integrity of the gut lining and minimizing food reactions.
Is it a fix all or magic cure? No! Absolutely not, but it’s always worth exploring for complex picky eating, autism, and neurodevelopmental disorders. These children have quite a bit in common from a biochemical bio individual perspective.
