Should You Try the GFCF (Gluten-Free CaseinFfree) Diet?

by Anne Windermere Patient Advocate

The gluten-free casein-free diet has been in the news in the past and more food stores carry these products than ever before. Now, there are cookbooks specifically geared for special populations to try this diet, including the "Kid-Friendly ADHD and Autism cookbook", and whole blogs devoted to sharing GFCF recipes.

When I started my son on the GFCF diet in 2001, we had to special order foods or go to a health food store to purchase the needed items. Now we can find GFCF foods in our local grocery store and even restaurants have begun to create GFCF items on their menu. The popularity of this diet is growing by leaps and bounds.

I had heard about this diet years ago from other parents who were a part of an on-line support group for parents who had children with autism and/or ADHD. I was hearing all these remarkable claims about the diet and my inner skeptic was provoked.

I heard stories of children with autism speaking full sentences for the first time after the implementation of this diet.

I heard other tales of children with ADHD who no longer had any of the behavioral traits which define this disorder following their switch to the GFCF diet.

I also heard from people who said that this diet was a lot of bunk and should be discredited as a way to help people who have autism and/or ADHD.

I always believe that the truth lies somewhere in between the two extremes.

The theory behind using the diet goes something like this: People who are on the autism spectrum and/or have ADHD may not be able to properly digest gluten (which is the protein part of wheat, barley and rye) and casein (which is a protein found in milk and milk products such as cheese, butter, yogurt and ice-cream). When these proteins are not properly digested the theory suggests that they form substances which act as opiates in the body. And in turn these newly formed substances alter the child's behavior, perceptions, and responses to the environment.

Is there any scientific proof of this? Actually there is.

There are many researchers who are studying the brain/gut connection and their findings are quite interesting. Here is but one study.

In a 2006 study by Niederhofer and Pittschieler entitled, "A Preliminary Investigation of ADHD symptoms in persons with celiac disease" the authors found that:

"The data indicate that ADHD-like symptomatology is markedly overrepresented among untreated CD patients and that a gluten-free diet may improve symptoms significantly within a short period of time. The results of this study also suggest that CD should be included in the list of diseases associated with ADHD-like symptomatology."

Here "CD" stands for celiac disease which means you are unable to digest gluten and wheat products.

I will now tell you how we discovered the GFCF diet and how it impacted upon my son. When he was an infant we discovered right away that he did not do well on milk so under our pediatrician's guidance we switched him early on to rice milk, which he drinks to this day.

When he was nearly four he was diagnosed with autism and I quickly found support groups on-line for both emotional support and information. The GFCF diet was discussed a lot between my friends and they had been implementing this diet with their children and noticing good results especially in terms of better behavior.

I was very resistant and skeptical of the whole idea. But at the same time my son was experiencing chronic loose bowels that were green in color. I was having a horrible time getting him to be toilet trained because of this issue.

Add to this, he also had eczema, a skin condition where the skin becomes inflamed, dry, cracking, oozing, and sometimes bleeding. My son's skin condition was so bad that he had it on most of his body and his skin would literally weep. He would itch until his skin became raw. On occasion he would also break out in hives.

I knew something was causing all these symptoms but what? I went to our son's pediatrician for answers.

Our dear doctor was not much help. He would tell me that the green poop issue was due to my son's developmental delays. I didn't understand the logic in this and kept pestering the doctor.

After some months of being told that these symptoms were normal I broke down and told the doctor that if we didn't get some help that I was going to give him a diaper full of the green diarrhea and put it on his desk. My son was nearly five and was still not potty trained due to this issue.

So we were sent to see a gastrointestinologist, a doctor specializing in the treatment of stomach and intestine issues. It was quite an interesting appointment.

I made the mistake of offering up the guess that perhaps the GFCF diet might help my son. My friends were pointing me in this direction, that gluten might be the reason for my son's symptoms. The doctor, staunchly traditional, accused me of seeking miracle cures from him for my son's autism.

I told him that the only cure I wanted was to help my son not have green diarrhea for the rest of his life. I was livid. I had not mentioned anything about curing autism. It had never even entered my mind. I wondered if we would have been treated this way if my son did not have autism. I was told that a gluten-free diet would not help my son and was sent home with no help whatsoever.

I angrily called our pediatrician. He then sent us to an allergist. And lo and behold guess what they found? They did the skin prick test and all these bumps raised on my son's small back, signs of sensitivities and possibly allergies to certain food substances.

Wheat was one of them. I wanted to go back to that arrogant gastro doctor and tell him, "I TOLD YOU SO!" but I didn't. I simply began the process of eliminating gluten from my son's diet.

The hives went away. The eczema faded. And most importantly my son finally had solid normal colored stool and I could finally have some success at potty training him.

Was this diet a "cure" for my son's autism or problems with attention? I give you an emphatic "NO" in our case. But it did help to decrease some of his more pronounced behaviors.

He didn't tantrum or scream as he did before we implemented the diet. I felt he was able to focus more and subsequently had an easier time learning. He wasn't so out of it and in a fog.

It makes all the sense in the world to me. If a child isn't feeling well then he or she is not going to be able to pay attention, learn, or connect with others as easily as when they are feeling more healthy.

And later I found that other relatives in our family were being diagnosed with celiac disease. What was especially ironic is that some of these relatives were the very ones to "pooh pooh" this whole gluten free diet thing.

After this experience, I do believe in a brain-gut connection.

Is such a diet right for you or for your child? I cannot answer that.

Some people report that this diet helps both physical and behavioral symptoms and others say it made no difference whatsoever.

I think for those children who are on the autism spectrum or have ADHD it may be worth a try to see if it helps.

It isn't always an easy diet to follow but there are so many resources out there to help and also support groups. It could be just one more tool in your arsenal to assist in managing the symptoms of ADHD or an autism spectrum disorder.

Anne Windermere
Meet Our Writer
Anne Windermere

These articles were written by a longtime HealthCentral community member who shared valuable insights from her experience living with multiple chronic health conditions. She used the pen name "Merely Me."