We started Aleks on the GFCF diet this past July. Before we started the GFCF diet, I first read Lisa Lewis' books, Special Diets for Special Kids 1 & 2. The two books give you the why and how the diet can work, plus the medical research behind it. I am constantly researching and reading everything I can about the GFCF diet and really found her books, which double as a cookbook, to be wonderful. I learned about the leaky gut syndrome and how many autistic kids have it and how it impacts their ability to digest gluten and casein. The easiest way to explain it is that their guts don't properly digest gluten and casein because of the weakened condition of the gut and how the proteins then sneak out into the blood and start attacking the brain. This is why the brain and all that goes with it are affected and how the diet can make a difference. The gluten and casein have an addictive effect on the brain and usually an autistic child with GI problems and food sensitivities is addicted to and eating only the food that is bad for their body. It's like a drug addict whose body tells them that they need the drug when in fact it is toxic and making them sick.
For Aleks, before her autism took hold of her, she was a great eater. She loved her veggies, fruit, grilled meats and always drank her milk. She wasn't picky and we used to joke that we wished we ate half as well as she did. We started the diet in July and the little girl eating at the table that last day before the GFCF switch only would eat a handful of foods. Her diet was down to peanut butter, grape jelly, whole milk, bread, grapes, cheese, chicken nuggets, french fries, an occasional vanilla milkshake and lots of ketchup. That is all she would eat and all she ever wanted. Veggies were 100% gone and she was unwilling to try anything new. She was so regimented about her diet that she would scream and act up if she didn't get these foods exactly how she wanted them. One of my worst and last memories before the diet happened at McDonalds. We were phasing out the dairy and allowed her to still eat chicken nuggets, french fries and ketchup. She had gotten used to eating the ketchup out of those little white paper cups that you would pump the ketchup into at McDonald's. McDonald's was her reward for a good session of Speech Therapy. See...I was learning too! Well, on the way back from our vacation, we stopped into McDonald's but had to eat on the road so all we received were the packets of ketchup. Aleks lost her mind in the car. She started kicking and screaming and dumped her entire lunch on the floor of the car when he saw that the ketchup was in a packet. She was almost uncontrollable. Fries, chicken nuggets and packets of ketchup were flying and I was so angry at McDonald's! I knew that this wasn't her, I knew that this was autism having a fit in our backseat. Despite knowing this, it didn't ease the sadness I felt watching her cry and shake in her little car seat. It was the moment that I knew that no matter how hard the diet was, it had to be better than this. I am so glad that I had this moment, because it kept me going on the road ahead.
Before the McDonald's/vacation episode, the day we had actually left to go up North, we had been to see her DAN doctor and get her tests done. It was a lot of work to collect urine samples out of a non-potty trained child, get a stool sample and hold her down to have blood drawn. Dr. Spore told us that she wanted the tests taken BEFORE we started the diet because she wanted to see what the food was doing to Aleks' system. These tests, plus the hair mineral analysis were done and sent off. We then started gradually taking her off dairy by mixing some Vance's Dari-Free in with her milk. Every day we would increase the Dari-Free and decrease the milk. We also cut out cheese and were checking labels for anything dairy/casein related. Let me just say that casein and gluten seemed to be in everything! After a week she was diary free. We then took out the gluten. We actually planned on doing it gradually, but ended up doing it in just a day. She was now on the GFCF diet. I went to Whole Foods and was pleasantly surprised at how many GFCF foods were available. Most were made with corn and rice flour which was fine on the diet. I didn't allow her to have soy because I had read that the soy protein make up was so similar to dairy that a lot of kids couldn't handle it. We were on this diet for about a month. We noticed the tantrums were lessening, her eye contact was increasing and her attention span was increasingly quickly. Her speech therapist told us after 3 weeks that she felt like she was working with a different little girl. Her attention per toy at ST went from 30 seconds to 20 minutes! This in just three weeks! She also listened better and seemed to be more present. This was wonderful, but not the end of the diet for us. I was making her homemade chicken nuggets, she was eating a lot of fruit, corn or rice pasta and still drinking lots of Dari-Free milk. The shocker for me came next when her IgG & IgE test results came back.
For autistic children, the IgG and IgE test results show what foods their blood reacts to. An IgE food is a severe sensitivity. IgG foods fall into categories from severe to less severe but all need to be avoided for the body to heal. That by the way is the purpose of the diet. To heal the body, by stopping the food poisoning and allowing the brain to heal. As it is healing and the opiate like foods are removed it becomes easier for the child to learn. I love this explanation that I heard from another doctor. For those who don't believe in the brain/gut connection, think of this. When you have too much alcohol to drink think about not only how your body feels, but how your brain feels and reacts. Hence the gut/brain connection. For Aleks, who has a leaky gut, the food wasn't breaking down in her gut, was leaking into her blood and attacking her brain. I knew after reading that, that we had to take out all toxic foods.
I was just leaving the radio station when I got a text from Bill. He knew I was going to WF and wanted to tell me that the test results were in. It started with yes, Gluten, Dairy and Soy were all big offenders. Then he said that I also needed to avoid rice, corn, yeast and peanuts and anything with eggs in the foods that I got her. What?! I called him and he said that in short she can't have those foods either. I wasn't overwhelmed until AFTER I left Whole Foods. All GFCF foods have rice flour, corn flour or soy in the. There were no breads, crackers, cookies, or pastas that didn't have something in them that she couldn't have. I spent an hour and a half in WF and left sobbing in my car. How could what seemed possible with the GFCF diet now seem so impossible. There was nothing that she could eat, at least that's how I felt. For two days I wasn't sure what she could eat. We met with Dr. S and found out the complete list and how much more extensive it really was. Aleks was now unable to eat gluten, casein, soy, rice, corn, eggs, yeast, peanuts, grapes, chicken, mustard (it's hidden in a lot!) and anything with coconut.O These were all high IgG foods and oats was her biggest offender getting the IgE marking. Her favorite foods, chicken nuggets, PB&J(grape), crackers, bread. We then took out everything else out of her diet and my journey on the GFCFSFRFCFYFEF diet began.
When we removed the corn, rice, yeast, eggs, peanut butter, grapes, etc., is when she had her withdrawals. The next three weeks were awful!! The withdrawals from gluten and dairy were minimal. In fact it was a pleasant change. The withdrawals from the rest of the list were a nightmare!! She cried all the time, was up constantly through the night, couldn't sit still, couldn't concentrate, was a terror at therapies and was just miserable. After two weeks I felt like I was going to lose my mind. Our Dr. told us that she had never seen withdrawals go longer than 4 weeks and to hang in there. We just kept hanging on by a thread. Finally, after three weeks the withdrawals stopped. She started sleeping through the night, eating the foods that I was now making 100% at home from scratch and seemed to be becoming her post GFCF self again. The withdrawals were done, but we did find out in the months ahead just how sensitive her body is to the foods and how even a little on her hands can cause the autistic stims to come back. More on that later...
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