Wednesday, August 12, 2009

Our results with the GFCF diet

I think the Gluten-free Casein-free (GFCF) diet can work for some children with autism. My opinion is not based on a preponderance of scientific evidence because science has not yet caught up with the realities of why people use the diet. Rather my opinion is based on the specific symptoms that my children had and what results that I have seen in my children as a result of the diet.

If you missed the first part where I went into the reasons that we tried the diet for my twin daughters, go back and read it. Done reading it? Good.

Before I go into our experiences let me just say that your experiences can and will vary. If you are thinking of trying this diet with your children do a lot of reading about it first - there are several good sites and books - and if at all possible consult with an appropriate medical person to help deal with any issues that come up.

So as I wrote last time we decided to try the GFCF diet for the twins - or technically in their case we were going GFCF and SF (soy-free). We started off first by slowly removing all sources of dairy (casein) from their diets over a four week period followed by wheat (gluten) over the next four weeks followed by a quick removal of soy. You have to take it slowly because if there is a real food intolerance there, as was the case with the twins, they can go through a form of withdrawal as you remove the food. (Hint, autism + withdrawal = very bad)

Just to mention it, this is one of the problems with the studies done so far on the diet - they are too short. The only double blind study on the diet lasted only 6 weeks. At 6 weeks we were still removing food from the diet. And it takes a while for the effects from the intolerance to fade, it doesn't necessary happen overnight - it will happen over the course of several months to a year.

What we saw from the removal of dairy was impressive. First, there was an improvement in some of the core problems of autism - both girls showed an increase in eye contact, an increase in attention, and they started paying attention to sounds.

The last part is a little bit strange, so let me explain it. After the twins turned a year old they slowly seemed to loose their hearing. It wasn't as if they couldn't hear at all - we did see them respond to some sounds some of the time. But for the most part the simply did not respond to sounds such as talking or noise. What was extremely unusual was they would not startle or react to sudden, loud noises. You could sneak up behind then and bang two pot lids together and they wouldn't flinch, blink, or show any sort of reaction.

Being good parents we took them for a hearing test. They both failed. We took them to a pediatric ENT who examined them, found no obvious physical problems, and sent them for another hearing test. They failed. Finally, he ordered a test called an ABR (auditory brainstem response). This test involved sedating the child and directly measuring the electric signals generated in the brain as a result of sounds. They "passed" this test and established that, physically, they could hear perfectly well.

What is unusual here is the amount that the twins were able to tune out all sounds. I had read that you might wonder if your child with autism was deaf because they wouldn't respond when you talked to them but I have never seen anyone else talk about their child being able to tune out all sound so completely that they wouldn't even startle.

So eliminating dairy seems to have started them down the path of responding to sounds again.

The speech and development therapists who were working with the twins at the time also noted that they started doing much better with their therapy. They would pay attention and become more interactive. They started learning and progressing through the tasks faster than they had before.

The other symptoms that I mentioned last time also started a slow fade and over the course of the following year disappeared. Their stools became normal, the bloating in their stomachs went down, they could sleep on their backs, and their eczema finally went away.

A year later when we repeated the food intolerance tests the readings for all three types of intolerance had dropped to just under 10 - for the casein that is a drop from over 100 to 10 which is a significant drop.

So, in short, for the twins the diet was a huge success. We saw the majority of the changes from removing dairy from their diet - they do not seem to be anywhere near as sensitive to wheat and soy. But, to be on the safe side, since there was some intolerance shown by their blood work, we keep it out of their diet.

We did not have the instant talking that you will hear about other places, and if fact we had to wait two more years before they would start talking to us. Nor did they become non-autistic and loose the autism diagnosis but even still, the changes were significant.


  1. Wow, I am just beginning my journey with this diet..reading, researching, and actually taking some things away from my kids' diets NOW, before any tests, before I've even finished my research. It is good to hear a positive testimonial. Thanks for sharing.

    Following you now. Just wrote a post on how I propose traveling with GFCF restrictions.

  2. Thank you for this detailed information. One of my twin is on the spectrum, and I can't thank you enough for sharing this.

  3. Hello, I was wondering if you can tell me more re the withdrawl symptoms as I just put my son on the diet. He's been GFCF for 3 days now and his stool is mushy and mustarad color with undigested food and a bad smell... do you have any idea if that's a withdrawl symptom at all? Thnk you!