How To Transition to the Gluten Free Casein Free Diet

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It has been 4 years since I transitioned my son to the Gluten Free, Casein Free diet that is espoused by many autism experts. The idea is that many kids with autism do not process dairy or gluten correctly, and over time, it can hurt their gut. Some refer to this as “silent celiac’s disease.” I won’t debate the scientific veracity of the diet, this is just one family’s experience. I know this is true for my son.

My son has always been very lactose-intolerant. Yet he would crave dairy, like a drug addict. I have heard this described exactly this way: the body craves that to which it is allergic. Because the body cannot properly digest the food, the allergic reaction creates opiate-like substances in the system. This in turn will create a stronger craving, and keep the vicious cycle going.

My son would get severe stomach upset, and it just wasn’t worth letting him have that bowl of ice cream. When he was four, I finally took him off dairy completely. His reaction was so severe that I went the extra mile to pull out the “hidden dairy” in foods, as well. It is pretty much in everything, so I had to become a proficient label reader. This intermediate step made transitioning to a complete gluten free casein free diet easier, I believe.

Since I was already reading the labels for ingredients I just stepped it up a notch and read for gluten as well. After some reading, I realized that I wanted to try the Gluten-Free Casein-Free Diet (GFCF). I read that some found improvements in eye contact, self-expression, speech and behavior. I thought I would give it a chance.

I didn’t just run out and buy everything new, throwing away all the products I already had. Instead, I slowly went GFCF, replacing potato chips with tortilla chips, for example. I just didn’t buy items that contained gluten or casein for my son any longer. I found a great deal of information on http://www.tacanow.org about the GFCF diet. As I said, I moved into the diet in stages. We would finish up the products we had, but when I bought new breakfast cereal for my son, I bought GFCF. He really didn’t know what was happening, until I had him completely on the diet.

A few months later, I started him on dietary enzymes, which to this day help him digest his food easier. The first thing I did was find a handful of foods that my son would eat that didn’t contain gluten or casein. At this point, I wasn’t concerned with nutrition, not yet. (this was hard for me, because I try to feed my children healthy food and buy organic when I can).

I had to make sure that my son would find the diet something he didn’t hate, because, as anyone with an autistic child knows, once the mind is made up in a negative way, it is tough to pull the child back from that dark place. We started out with taquitos, hot dogs, roast beef, hamburgers with no bun, french fries, tortilla chips and the best GFCF brownie mix I could find. I added in GFCF frozen waffles, cocoa krispies-type cereral and rice dream ice cream substitute to round it out. I made sure everyone knew that they needed to clear anything he was eating through me. I brought brownies or cupcakes to parties, so he wouldn’t feel left out.

In the beginning, I put myself and the girls on the diet as well, so he wouldn’t feel singled out. After a couple of months, we transitioned back to regular diet, and he stayed with the GFCF plan. Part of the reason this worked is that he really did feel so much better. He had less problems in the bathroom, less digestive issues. The few times he had a diet infraction, I allowed him to do so, and he found that it just wasn’t worth it.

In the scheme of things we found he is also sensitive to soy, but only on an empty stomach. He can eat soy pudding after a meal, but if he tries to eat it first, he will have digestive problems. Over the years, he has learned to self-police and will tell others, “I can’t eat that,” or, “I’m allergic.” He is also content to watch us eat dessert in a restaurant knowing that when we get home he will get something that he can eat.

In addition to improved digestion and some weight gain, we also saw that he seemed to be more relaxed on the diet. He calms easier, seems to concentrate more fully. His behavior is very connected to his diet. In fact, I know when he has had a mis-step, because his behavior changes. Though the diet doesn’t specifically prohibit food additives and preservatives, including artificial flavors and colors, we try to avoid them when we can. They tend to send his behavior and moods into a tailspin, and it is just best to completely steer clear of them.

The hardest thing for us with the diet? My son eats few vegetables. I have had to compromise and provide a multi-vitamin, along with fish oil for nutritional needs. I also am not above sneaking vegetables in other foods, though he is pretty good about detecting differences. He will eat hummus and spinach, so I do provide that. He has also worked up to a small spoonful of whatever vegetable we are having for dinner that night. But again, it has been a transition.

So how can you make the transition to a GFCF diet as painless as possible for all concerned? Use what you have, but when you buy again, buy GFCF. You see this list of acceptable foods and unacceptable ingredients. Familiarize yourself with the names of ingredients. Print out the list and keep it with you when you shop. Gluten and casein are in many foods you would never expect. Be a label reader!

Keep a list of what you have tried so if you don’t like it, you don’t accidentally buy it again. There are some great products out there and some not so great. (you can email me or comment below if you would like…I would be happy to provide you with a list of foods that have worked for us).

Don’t change brands of foods that are already “approved” foods. For instance, if the child likes waffles, buy GFCF, but don’t change the brand of bacon you serve. Or keep the eggs the same way. If you change bread, try toasting it and using the same peanut butter, if it is acceptable. Don’t change the jelly. Find substitutes for tried and true foods. Finding gluten free foods is a lot easier than it used to be (even chocolate!). Almost everything can be subbed out. The exception to this, sadly, is cheese. We haven’t found a GFCF cheese that is enough like the real thing that my son will eat it.

When possible, involve the child in food choices. Teach him to read the labels and to understand what happens when he eats foods that his body doesn’t tolerate well. Let him pick out some foods he would like to try, and involve him in their preparation. My son was more than willing to eat meatloaf with GFCF breadcrumbs when he was the one kneading it.

Don’t give in. Once you make a decision to try the diet, stick with it. It can take over six months for all traces of casein and gluten to leave the body. Give it a proper trial. The child might bellyache a bit, but keep at it. Make sure to provide a vitamin supplement to make sure that the child is getting proper nutrition. Of course, the best vitamins are from the source food, but if the child won’t eat it, vitamins are better than nothing. This is a good suggestion for all kids. Consider probiotics, which add good bacteria to the intestinal flora to balance the digestive system. Limit processed sugars, and cut out artificial colors, flavors, HFCS (high fructose corn syrup) and preservatives from the child’s diet when at all possible

Yes, you can eat fast food. Pay attention to menus, and ASK if you aren’t sure. A hamburger wrapped in lettuce with no bun is a good bet. Make sure it is just beef with no wheat fillers. And avoid the cheese. In my next article, I will write about fast food options we have found that work for us.

Don’t rush right out and buy a GFCF cookbook, not at first. Feel your way around a bit, take your time. It is OK to use boxed mixes, and some taste quite good. I take a certain brand of brownies to events and my son has to fight to get one!

Don’t be too hard on yourself if it isn’t perfect… you are learning and so is the child. The goal here is to transition to the diet, not be a Nutritional Hardnose. If you are stressed, the child will figure it out, and he will become stressed as well. With a bit of practice, you will be an excellent label reader and have a collection of foods that work for your child and maybe for you, as well.

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