This diet is very hard to implement and it is very easy to get tired of the limited and often undesirable choices. The worst part is making my daughter feel like a freak at birthday parties because she has to eat some safe crappy treat while others are rubbing cake all over their smiling faces. Nonetheless, the hype machine has everyone believing that this diet could lead to some real improvements in your autistic child. I’ve heard a success rate of as high as 65%. Given how hard this diet is to implement, one would think that the other 35% of the participants are probably just doing it wrong. Personally, I think these numbers are not completely accurate for many reasons of which I won’t get into right now. In fact, I find it ironic that my daughter started having digestive problems on this diet when the complete opposite is supposed to occur!
I’m normally a very careful and details-oriented person but after 5 months of implementing a casein-free diet for my daughter and 3 months of implementing a gluten-free diet also, my wife and I discovered that we’ve unknowingly been feeding her foods that have hidden casein and gluten in them. It’s brutal enough trying to do this, but discovering that there have been enough infractions to basically nullify the experiment is really discouraging. You could probably get better advice from someone with more credibility than I but I’ve made enough mistakes and learned enough during this painful time to be able to come up with a list that I believe could help others going through the same thing. Here it is:
1. Lower your expectations for success. As stated in the introduction above, it seems as though most autistic people benefit from this diet. Hope is a wonderful thing, but my daughter doesn’t seem to be one of the lucky few getting anything out of this diet. Your child may not be one either.
2. Get it over with. Since my daughter is a very picky eater and pretty much only ate food with gluten or casein in it, I was worried that we wouldn’t be able to pull it off. Like anything, people find a way to adjust and everyone involved did just that. There will never be a good time to start so just set a start date and end date (at least 3 months I hear is recommended) and stick to it. If it works then that’s great. If not, then at least you tried what seems to be the most recommended treatment for autism.
3. Ramp up. Try introducing alternatives and move towards the full diet slowly during the weeks leading up to it. It’s going to take a lot of education and trial and error so avoid the big bang approach.
4. Don’t get hung up on finding substitutes for everything your child used to eat. Not only will it cost you a fortune for alternative/specialty flours and foods, but the taste will consistently disappoint you. I have baked numerous loaves of bread and various baked goods and my daughter rarely would even try them because they either looked or smelled a little different. I can’t blame her – rice-based goods don’t come close to wheat-based goods in terms of taste and texture. Your best bet is to simply increase the good and easy foods like fruits, vegetables and meat that hopefully are already in his/her diet. Be careful of the temptation to introduce junk food to make them feel better and because you can’t think of anything to give them at times.
5. Be diligent. Supposedly a very minor infraction every 5 days is enough to nullify the experiment. Learn to read ingredients and spot hidden sources of gluten and casein. Often you’ll have to call the manufacturer to be sure since gluten or casein could be present in things like modified corn starch, natural flavors, artificial flavors, or even be off-label because although it was used in the manufacturing process, it was not an official ingredient. I didn’t know about vinegar and have mistakenly given my daughter ketchup many times. I have also used vanilla (which is not gluten-free) in numerous baked goods. It may be best to avoid food processed in a facility that processes dairy or wheat products. Look out for cross-contamination in your kitchen also. Kosher symbols are a good guide but I’m not sure if they are as stringent as we are supposed to be. For a list of GFCF items, check out http://www.talkaboutcuringautism.org/gfcf-diet/autism-diet-gfcf-foodlist.htm. Warning – I believe there are items on this list that shouldn’t be!
6. Warn teachers and school staff. Kids like to share and trade snacks and it’s reasonable to assume that a child on this diet may not turn down the opportunity to eat something they shouldn’t when you are not around. Don’t forget about Halloween, Pancake Day, Christmas (or holiday) parties, Valentine Day, Easter, pizza day(s), birthday parties, and any other times food may be served at school. Maybe you could make arrangements in advance to have alternatives available for your child (ideally while not making him/her feel so different). Ask the school to warn you.
7. Everyone in the family should go on the diet. Modeling is very important. It’s easier to get your child to adopt the diet if everyone else if doing it. Not only will this not make your child feel so different but you may find others could benefit from the diet also. I was surprised to discover that my digestion improved when I cut out dairy.
8. Relax. My daughter is more responsive when I am calm and am not putting pressure on her to eat (something I’m not good at). I’ve heard that it could take up to 15 or more attempts to get a child to accept a new food. Follow the old protocol – warn, small changes, no pressure, many attempts, encourage, reward, blah blah blah. Your (extreme) patience will be rewarded.
9. Get help. Getting them to eat – especially picky eaters – is going to be a challenge and will take time. Good nutrition will be a secondary concern initially, so there may be some important nutrional gaps you should address with supplements. We don’t want to do any harm so it may be a good idea to consult a nutrionalist and/or doctor for advice.
10. Educate your child. I don’t know how to explain a “potential food sensitivity” to my 5 year old daughter who doesn’t even know she has autism, but she does get the idea that wheat and milk might be harming her somehow and because of it, she is embracing the diet. She is learning the diet language and even asks to make sure that something doesn’t have wheat or milk in it. Kids are always smarter and more capable than we think.
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My daughter didn’t have any noticeable digestive issues before we started and we have not realized any significant changes in her because of this diet yet. I am very interested in hearing about some real success stories about people on this diet, particularly, how long it took to notice a difference, what those differences were, and if there were any digestive issues before the diet began.
Good luck!
