Transitioning to the Gluten-Free/Casein-Free Diet

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by Christine Roach

Why I Do the GF/CF Diet
When my son, Garrett, was first diagnosed with autism, the developmental psychologist who evaluated him said that a lot of young people on the autism spectrum have intolerances to products with gluten or dairy and that removing them shows significant improvement in their behavior/development. She even said that some kids were “cured” after a couple of years. (I personally do not really believe that autism can be cured, but I do believe that this diet can help our children progress more than they would if they were not on the diet.) The main point that she stressed though was that it takes time. If you don’t see a change in your child in the first couple weeks, be patient. I think a lot of people give up too early.

I did not see a significant change in my son until after about 6 weeks, but the change was definitely worth it. He was one of the crazy kids that would wake up in the middle of the night and be up for 3 hours at a time before going back to sleep. I was seriously averaging 3-4 hours of sleep a night because of this…mostly in 2-hour increments between his waking up. Once he was able to get all of the gluten and dairy out of his system, he started sleeping through the night. It started with a couple of nights a week that I would be able to sleep all night, then every other night, then eventually every night. That right there is the main reason that I follow this diet. It is so worth it to me just to get the sleep I need to function. Another good thing I noticed with the diet is that he started talking more and using more words in his sentences. Now, like everything with autism, he sometimes regresses back to using just one-word sentences, and no, he still doesn’t use conversational language, but it was nice to be able to understand what he wanted.

In the cookbook, The Kid-Friendly ADHD and Autism Cookbook, it talks about how gluten can act as an opiate for children with gluten intolerance. They will laugh for no reason, etc., essentially acting the same as someone under the influence of an opiate. I had also noticed these behaviors in my son, prior to going on the GF/CF diet. He would wake up in the middle of the night and laugh uncontrollably for no apparent reason. This could last for hours. Once the gluten was no longer in his system, this also stopped. He calmed down. His behavior became better and more typical.

My daughter Caiti is only 2, but she also has been diagnosed with autism. Before she started on the diet she literally would only give eye contact if I was singing to her. She kept to herself and would have difficulty falling asleep at night. Once I put her on the gluten-free/casein free diet, she improved tremendously in her eye contact. She goes to bed and falls asleep a lot quicker. She also has discovered other people and tries to interact with them.

How Hard is the Diet?
This can be a hard diet if you make it hard. I think about the things my kids used to eat: macaroni and cheese, hot dogs, chicken nuggets, PB&J. Most of that stuff they can’t have. That is when you learn to substitute. It is said that you introduce your child to a food 6 times before giving up because they have to get used to the idea. So, don’t give up when introducing baked chicken tenders rather than chicken nuggets or corn pasta spaghetti (which is sooo much better than rice pasta) instead of normal spaghetti. They will resist it at first, but will get used to it…and they don’t have to give up on the junk like plain or barbecue potato chips (look at the ingredients on the back) or fruit snacks.

My kids are major fruit eaters. That is a blessing to me. So, for breakfast, we have fruit…i.e., a couple bananas, an apple, oranges, etc. You can find gluten-free waffles at health food stores or even at Kroger (Smiths) in the organic section. Those are a hit with my daughter. The most popular of the gluten-free cereals in my house are corn pops or fruity pebbles. They can use rice milk, soymilk, coconut milk or almond milk. My kids like the almond milk the best. All of these milks also come in chocolate which is a nice bribery when trying to get your child off of regular milk. You can use gluten-free bread to make french toast and just use an egg mixture and leave out the milk. Also, this diet still allows for bacon and eggs. Basically breakfast really can remain the same.

We use peanut butter on a rice cake for an open-faced sandwhich (Quaker brand has a carmel flavor that is actually both gluten and casein free), a handful of chips and some fruit snacks or fruit for lunch the majority of the time. You can also find gluten-free breads at most grocery stores and at all health food stores. These breads taste the best when they are toasted. I use strawberry jam on the gluten-free breads. It is also a good idea to incorporate vegetables. My kids love salads. They can eat taco salad if you leave out the cheese and sour cream. Any salad is great, as long as you make sure the dressing is GF/CF and leave out the crutons. Corn on the cob is also a favorite at my house because it is easy to handle (no need for utensils).

For dinner, I usually make some kind of meat, like chicken, fish, pork chops or hamburger patties and serve it with veggies or french fries/tater tots (some have wheat in them and some don’t, so you have to check ingredients). Kroger-brand tater tots are gluten free and most Ore-Ida tots are, as well. We also will fix corn pasta with spaghetti sauce. You can get a hamburger kids meal without the bun, if you want fast food. When we eat out, I always just order a big plate of french fries for my kids. That is the easiest. They can eat Mexican foods, i.e, tacos, if you use corn tortillas or hard shell tortillas and leave out the cheese and sour cream. Also, a great option is Chinese food, if you make sure that the soy sauce does not have any wheat. I use La Choy-brand because it is gluten-free. You can make rice and use the canned chop suey or chow mein toppings. Again, just check the sauce ingredients to make sure there is no wheat.

Yummy snacks and treats that they can eat on this diet: Any fresh vegetables and fruits (my kids love baby carrots), popsicles, soy ice cream, sorbets, fruit snacks, any gummy candies, Skittles, hard candies like Dum-Dums. Most fruity candy is fine. The fruity candies that do have flour that I can think of off the top of my head are Starbursts, Twizzlers and Laffy-Taffys, so don’t buy those. I make rice crispy treats using lactose-free spread rather than butter and fruity pebbles. Marshmallows are allowed. There are also wheat and dairy-free brownie mixes, cookie mixes, cake mixes…you name it. There are pre-made gluten-free/dairy-free pretzels, snack bars, cookies, etc. When using these mixes, if they call for butter, it is easy to just use shortening.

I don’t live by a health food store, or I would do the majority of my shopping for the diet there because they have a great selection (Trader Joe’s has a whole list they will give you of gluten-free foods. You just have to check them to make sure that they also are dairy-free), but I can find anything I need at most grocery stores in their organic section.

A very good guide for the GF/CF diet can be found on:

http://gfcf-diet.talkaboutcuringautism.org/index.html

Other Important Factors
The holidays are a nightmare for this diet. Everywhere you go, there will be a bunch of yummy food. If you are diligent, you can bring your own food for your child and hope they don’t go grab all the other stuff and run off and hide so they can eat it (haha). My son can sniff out food that he shouldn’t eat, so I give up at Christmas/New Years because everywhere you go is the food. It definitely does affect him though. Last December, I got absolutely no sleep. But, since I was keeping to the diet at home, it didn’t take as long, once the holidays were over, for him to get back into the normal routine. I think it took 3 weeks before he was sleeping through the night. Don’t feel bad if they do end up eating something they shouldn’t. It happens all the time with me. I just know when it happens that he is going to have an off night where he’s bouncing off the walls at 3 o’clock in the morning.

If your child is in preschool or daycare, where they serve snacks, you either need to send snacks or let them know and they can purchase diet-friendly snacks (after all, you probably have a snack fee, and they can use that for your child’s needs). I send special snacks with my children at church because their little group they play with during church has snacks, and goldfish crackers or graham crackers are not what my children need.

If you like to cook, there are many recipes/cookbooks out there. In fact, Larraine (The Gluten Gal) has a new book, Gluten-Free and Casein-Free Recipes for Kids, which has some wonderful, healthy, kid-friendly recipes that are perfect for kids like mine. The best thing about her cookbook is that many of the ingredients can be found in your cubboard already and the recipes are very simple but delicious! Check Larraine’s GF Store in the sidebar of this site for more information. You can also use this website (theglutengal.com). It has many easy, delicious recipes. They are all GF, and many have GF/CF options as well. (FREE recipes)

Getting a Square Meal
In The Kid-Friendly ADHD and Autism Cookbook, it gives suggestions for helping your child eat healthy. It suggests that instead of using the food pyramid for your child, you picture giving your child a “square meal.” When you picture a square, the right half of the square should consist of more vegetables, the left side is split in half with the top half being good proteins, and the bottom half being starches and fruits. I actually went out and purchased the plates that have dividers for the different parts of your meal. That is a good way to visualize this concept.

Supplements are important. I use the gummy multivitamins from the organic section. You have to be careful with vitamins and make sure they are gluten-free/casein-free as well. You can ask your pharmacist to help you with that.

In Summary
I am pretty passionate about this diet. No, my kids have not been cured of autism, but it is so nice to see their eyes. It is so nice to notice regular bowel movements and not loose stools all of the time. It is nice to see calmer behavior and to get some sleep. In short, this is one thing I can do as a parent that will, in the long run, help my children. And, yes, it works differently for everyone. Some people see no change, but a lot of people see change, especially when starting young. I am definitely not THE expert on this diet, but I have found what works for my family.

For more information on autism, here are my favorite websites:

http://www.squidoo.com/autismfactsandmyths

http://www.neurodiversity.com/

http://www.zacbrowser.com/

http://www.talkaboutcuringautism.org/medical/danprotocol.htm

http://www.generationrescue.org/vaccines.html

http://www.special-kids.com/videotest.cfm

Here’s a good one for ADHD:

http://www.add.org/articles/index.html

Comments on Transitioning to the Gluten-Free/Casein-Free Diet

July 16, 2008

Sarah @ 5:50 am #

What a helpful blog! This is a great find for anyone faced with changing a diet to help their child!

September 6, 2008

Evangeline @ 8:57 pm #

Fantastic links!
I like the article and pics.
Wonderful, thanks.

July 16, 2009

jenny @ 11:58 am #

Thank you so much for taking the time to write your article. I enjoyed every word. You did a great job! You must be a wonderful mom, don’t every question yourself on that. Your children are very lucky to have you.

January 12, 2010

David Shaw @ 8:36 pm #

WOW Christine…! Good STUFF…! I am a gluten free teacher and educator and think you’ve done wonders with your family. This article is GREAT…! The only product I’d like to add to your list is the GF grain quinoa (say: Keen-wah). It’s very popular in south America where it grows almost wild. Here in the states it can be found at most health food stores. It cooks FAST and tastes great. It’s also considered to be a complete protein because it has 8 necessary amino acids. I have recipes if you want them.

Keep up the good work!
david

March 23, 2010

Brandi Aune @ 9:09 am #

I totally agree with the GF foods my son Kyle has been on this for 1 year and the behavior is totally different the Dr.’s say that it does not affect this but they are wrong. He is a totally different kid when he has gluten. Thanks for the story.

June 6, 2010

Ann Flanders @ 10:16 am #

Love your article. My son is autistic and had very similar sleep problems. I was so sleep deprived for two years. My daughter has ADHD which has caused me to do even more research. I would really watch out for the chinese food, because of the high content of MSG. There are tremendous amount of L-Glutamate receptor sites in our bodies. When we eat foods with MSG or glutamic acid (found in many forms), it can act as a neuro exicitotoxin. It has been known to cause obesity and endocrine problems as well as some neurological problems. Because of my daughter’s problem I have had to do more research and we are on a very strict organic, completely free from anything artificial diet. We do sometimes get hamburger (no bun) and french fries when on the road but try to mostly eat at home. Soy products also cause absorption problems with some minerals and amino acids. There are tremendous amounts of websites that let you look at what all the artifical ingredients do to our body. My autistic son has a genetic methylation defect. He cannot get rid or cleanse his own body from anything artifical so we give him glutathione and N-acetyl cystein to help his body cleanse itself and we avoid anything artifical. It is a very hard diet to follow but well worth it. We also see a MD and a Dr. with a PhD in biochemistry. Good Luck.

April 24, 2011

Dustin Hupp @ 5:51 pm #

I was diagnosed with Coeliac’s disease at the beginning of 2011. Before that I would eat anything and everything and still can’t seem to stop. I’ve had very bad stomach pains and lots of other pain in my abdomen area for a long time. I try so hard to eat foods without gluten because of the fear the doctor has put into me, but get so darn frustrated. I try to bake bread but seem to mess it up. If I get it right then it goes bad fast. It’s like I can’t seem to keep a healthy diet and enjoy food. I have no patience for preparing “everything” that I eat and no will power. I’m 238 pounds and 5’8″ tall and way obese according to the BMI index. Living in remote region in Northern Alaska makes it a bit inconvenient to buy gluten-free products without bartering a seal and a whale for shipping. So… I . I dont know how much longer I can keep this up. I constantly say to myself that I’ve been eating this way for 41 years and have been miserable for just about that long that why does it matter if I’m gluten free? It’s an everyday struggle with myself and I really have no support groups except what’s on this internet.

April 26, 2011