Tuesday, August 11, 2009

Why we tried the GFCF diet

In my previous post I talked about the negative publicity that the Gluten-free Casein-free (GFCF) diet was getting and the need for more research into whether an elimination diet like the GFCF can work. I also said that I am of opinion that it does work - even though there is not sufficient evidence to say that from a scientific or medical point of view.

I thought I would take this opportunity to explain why I think the diet can work. I will warn you in advance, my reasons are based on my experiences and not on any scientific study. If you are the sort of person who thinks that there can be absolutely no value in such statements, you would want to stop reading now. Having said that, I think my experiences are less common than most and I do have some objective data behind my statements.

For those of you who don't know, I have three daughters who have autism. My older two daughters are identical twins so they are among the 60-90% of identical twins who both develop autism. As a fun fact, the change of having identical twins with autism happen to you are relatively small, something like 1 in 50,000. Lucky us.

The twins have been on the the GFCF diet for over three years now and have very good results from it. My younger daughter, while her diet is somewhat being limited by living in the same house, is not on the diet and does not seem to need it. So the following applies only to the twins, my youngest did not have have any of the issues listed below.

This is going to be a little long, so I am going to break this post up into a few parts. This part is going to address the reasons why we tried the GFCF diet in the first place and later parts will go into what effects the diet had and some of the arguments against the diet.

So, the reason that the twins are on the GFCF diet is simple - a developmental pediatrician recommended it. He recommended it for the several reasons -

First, both girls had a history of having of frequent loose stools. We did not experience the explosions that are referred to other other sites but, let me put it this way, things did not have the shape and consistency that they should (think applesauce). We also had problems with constant diaper rashes and redness.

Second, both girls constantly had bloated stomachs. They were not badly distended to the point were their regular pediatrician would have taken steps to address the problem, but it was noticeable.

Third, up until the twins were 16 months old, neither girl was able to sleep for any length of time on their backs. They had to sleep in a bouncer chair, a car seat, or something of the sort to sleep for more than 30 minutes. Once they could turn over they started sleeping on their stomachs and would sleep for longer but if they ended up on their backs they would quickly wake up crying.

Forth, both girls craved milk and other dairy products such as cheese. To put this into context, both girls were somewhat picky eaters and we couldn't get them to even try solid food until 16 months or so - they just weren't interested in what we were eating and refused to try what we gave them. But, they would happily drink bottles and bottles of milk, and once they did start on solids, would happily eat as much cheese as we would give them. They also loved eating tofu - how many infants do you know crave tofu?

Firth, the twins had problems with eczema. Twin A constantly had it all over her body while twin B would get large patches of it every couple of weeks. This is one of the very few areas where they were different, and we still don't know why.

As an aside, I think it is worth noting that we had talked about all of the above with the the twins' pediatrician and most of the time received only non-committal responses. We did get some advice on the eczema - put skin lotion on it. I really doubt that any of the above is in either girls medical charts, even though we mentioned each of the concerns several times. This is the reason that I am skeptical of the Mayo Clinic study that relied on the children's medical charts - my children had some of the symptoms yet I don't think it would be on their charts. Our pediatrician is actually very familiar with autism and its related problems. They are the one who first picked up on the it in the twins and referred us for an evaluation at 15 months. So if a pediatrician who is on top of all of the issues and can recognize autism that early wouldn't chart the non-specific GI complaints, who would?

The last and most probably most important reason for the diet was food intolerance tests that the development pediatrician ordered. As part of his initial consultation for the twins he went over their history, examined them, and then ordered blood tests to check for food intolerance to gluten, casein, and soy.

I am not going to go into detail about these tests but they are fairly standard things - they look for antibodies in the blood that would indicate an intolerance to a specific type of food. The tests gave back a numerical score in the following sensitivity groups - less than 10, undetectable or very low; 10 to 15, low; 15-20, moderate; 20 to 50, high; 50-100 very high; over 100, extremely high. If you scored in the bottom group, as most people would, you had nothing to worry about. As you went up the scale the the intolerance became worse and worse.

Both girls had similar results and the results were interesting. For gluten and soy both girls showed a very mild intolerance (low group) but for casein , well, let me put it this way, you know the saying "off the chart"? That is exactly what their scores were, off the chart, coming in at over 100 in the extremely high group.

Based on all of the above the we took them off of casein, then gluten, and soy.

In the next part I will talk about the results of the diet.


  1. I am so glad it is working out for you. I think diet is overlooked for so many kids, not just autistic kids. It amazes me that I doctors give kids meds for constipation and rarely ever look into taking otu dairy or anything like that. I tried gf/cf with my son for about 3-4 months and din't get any results but he never had digestive issues (other than MAJOR spit up as a baby). We tried again at the beginning of the summer and took out some other foods as well but still not luck. We are done with diet at this point but I am glad to hear it is helping your girls.

  2. I am sorry that the diet didn't work out for your son. It seems almost random in a way who will be helped by it and who won't.

    I am still amazed at the variety that you see in children with autism, its like they all have their own unique condition that requires treatments that are tailored to their specific needs.