Gluten-Free, Casein Free.... no way!
For a few years now, people have recommended doing a GFCF (Gluten-Free, Casein-Free) diet with kiddo to combat Autistic behaviors. The first time I heard about it was when kiddo was about six years old and I decided to go to a support group for parents of autistic children. It was before any testing and I had more or less just started to really look at kiddos behaviors as possibly being on the spectrum. I thought that I would go and meet some other parents and see where it went from there.
They talked at length about using the GFCF diet with their children, a few were just starting it and one had been doing it for about a year. At the time, when they explained the diet, I immediately disregarded it. My son was on a feeding tube for 20% or more of his nutrition which was dairy based and the foods he would eat orally were all either wheat ridden carbs or cheesy delights. I could not possibly further limit the foods he could eat. Additionally Bio Dad didn't think Autism was even a remote concern, so I wouldn't have support if I tried.
Now, several years later, kiddo is still on the feeding tube, but only getting 1/16-1/4 of his supplemental nutrition by tube. My mom again told me of a good friend of my sister's who's son is Autistic and had been on the GFCF diet for a few years now. She said his behavior changed drastically and he was doing incredibly well on it.
In school and home, kiddo still has troubles, with hyperactivity and attention (diagnosed with ADHD when he was five) and it has been suggested his medication be increased to help him in addition to a number of other pharmaceuticals to help stabilize mood and behavior. Kiddo has been on so many drugs in his life time so far, most of which were definitely needed, but the idea of giving him another string of drugs to change his mood or activity bothers me. There are a long line of mood stabilizers and hyperactivity drugs out there that are given to children on a daily basis without a second thought. But if you do a little research you will find that for the most part, these drugs are not tested to the extend of long term effects on a developing brain or body of a child. Just that fact worries me, but additionally, when kiddo is on a higher dose of his ADHD medication, he isn't the same kid- more of a zombie. Now a zombified kids can be very compliant and easy to work with (just watch out for the teeth), but its not MY kid.
So I decided to start actually looking at other interventions to try to help kiddo before loading him with the recommended meds. I started to research more into the GFCF diet and its effects or lack of effects in some kids. I talked with kiddos pediatrician and nutritionist and they said it was ok to try, but may be more work than it was worth in the end. My opinion was that if I could try nutritional intervention on my kiddo and it made even a remote difference, than it was worth it, worth keeping him off another drug he may not need.
Now let me be very clear here, I am not against using pharmaceutical intervention with kids to help stabilize them. Kiddo, for a long time, would turn to self injury when very angry or upset. I could not let that happen, I mean we are talking about a 4-5 year old smashing his head into a steel light posts. I had to do something to help him before he seriously hurt himself. Kiddo was on a mood stabilizer that his nutritionist suggested and it did make a drastic improvement in him. But I am saying that if there are any other options, as a parent, I feel it is my duty to exhaust all other possibilities.
About a month ago (2/6/12) we started an exclusive Gluten-Free diet in our home. I knew that it was going to be difficult if not impossible to have separate meals for kiddo and the rest of the family and honestly I wanted him to have everything that we had, so I started to change the way I bought and prepared foods for all of us. The few weeks prior, I had started to try some store bought Gluten-Free products and most of them were not received with much fan fare (in fact they were very much disliked if not hated). I started to look into what other GF folks did for food, purchasing and preparing at home. I started to make things at home for meals that were GF and even Casein-Free to try to test them out with kiddo (who still has considerable oral aversion issues and sensory complications) and see how it went. I was pretty excited when he started to give me huge praise on meals that I was making for dinner like GF Chicken Parmesan and Chili with Corn Chips. My biggest challenge was yet to come though. Kiddo loves bread and eats so much of it, I had to find a bread he would like.
Before we decided to really commit to the GF diet, I talked to kiddo about it. We took a trip to the library and looked at some books that specifically talked about Autism and dietary changes. I read to him about what the studies had stated about the change in diet and possible result. I was very honest in telling him that it may not change anything, but there is a possibility it could. I asked him if HE wanted to try it and he said he did.
So I started looking at recipes on many blogs and websites of folks with Celiac and found some great help on the subject. My favorite is Gluten Free Gobsmacked, a fantastic website with a celiac host who shares countless recipes and insight on eating completely gluten-free.
I started my quest for edible gluten-free bread, making loaf after loaf, with terrible results. To make matters worse, most of the recipes I came across were for use with a bread machine which I just didn't have and can't really afford at the moment. So I was resigned to making the recipes conventionally and the resulting loaves were not acceptable, especially to kiddo.
One day I was reading one of the blogs and in the comment on the blog, a person wrote out a recipe that they use with what they said were great results. I decided that it couldn't hurt to try, so I did. I did like the flour blend they were using (Tapioca, potato starch and rice) so I gave it a whirl. To my surprise it came out beautifully! So the test came, what would kiddo think.
The next day I made him a PB&J for school with the new GF bread. I was so excited to see what he had to say. After school he came home and told me he threw the sandwich away. I nearly blew a fuse. To this point I had made about a dozen loaves of bread, each one he didn't like the taste or texture of. I was confounded, MacLeod and kid sis and I thought that the loaf was wonderful. So after some tears, from me and him, I asked him if he wanted me to give him a store bought loaf of bread and he agreed. So the next day I went to the local grocery store, pick out a loaf and paid my $6.50 for the tiny parcel of bread and went home and made him his lunch. The bread was ridiculously dense, I immediately knew he would not eat it. But I went along and dropped off his lunch at school.
When he came home he sheepishly looked at me and said, mom that bread was really bad, yours is great. Ha ha! Victory! I made him a half sandwich with some jam and a slice of the bread and he confirmed that he did like the bread and would continue to eat it. I don't think the smile came off my face for about 6 hours.
So with the bread hurdle jumped, we now have continued to find and use great gluten-free products like this fantastic corn pasta that kiddo swears up and down is better than its wheaty counterpart. Every meal, breakfast, lunch and dinner, for the last month has been totally gluten-free and he is loving it.