I have posted before on the subject, and my position has not changed.  Getting K on a GFCF diet was one of the 2 best things we did for him (the other was starting his anti-seizure medication).  The change was quite profound and that is why we tell others our experience.  We do not try to indicate that they too can/will see such improvements, but that this is what has worked for K.  In many cases we have had other people tell us that the diet change has had significant, positive impacts on their children too.

In reading the research it is important to consider that the researchers are trying to answer a very precise, limited question and inferences and extensions beyond that question should be made carefully.  I did not read the full articles, just the above reviews, but in many cases the researchers do not comment on any changes, if any, that the participants had regarding their behaviours or autistic traits.  These points are outside the scope of the question being asked and therefore are not deemed relevant to the discussion.  For parents, these are the most relevant points and the underlying mechanism is secondary and this is likely one of the main reasons why average parents rely on anecdotal evidence over scientific research.  I’m afraid that on this particular topic I’m with the average parent.  If we were to follow the research K may not have been able to make such significant improvements over the last 3 years.  This is of course an unanswerable question as we don’t have a time machine to turn back the clock and try it all over again, but we are pretty secure in our supposition.

It is interesting to me that despite the bulk of the research in this area indicating that the GFCF diet has no impact on autistic symptoms and the leaky-gut hypothesis is flawed (in the studies I have seen to date) yet it is a very widely talked about and tried “treatment”. Our old documents repository tracked the number of times articles were downloaded and this was the most downloaded by a margin of 3.5:1 over the next most active article.  Obviously parents aren’t reading the research or they don’t believe it and, like us, decided to try it anyway because it is so frequently discussed with many good results- anecdotally of course.

Some final thoughts. “The diet” can be difficult at first and is definitely more expensive, but once a routine is established and you become familiar with what products are “safe” it is not hard to manage and has become second nature for us.  My last point is just to ensure that you are meeting your child’s nutritional requirements.  We worked with a dietician to ensure we were giving K everything he needed to thrive and that the GFCF diet was not going to have a detrimental impact on his health and development.

I was prepared for the usual bias due to receiving the information from the company and it’s paid researchers, but was pleasantly surprised by a comment from one of the physicians that was speaking. He strongly urged everyone in attendance to do their due diligence and not just take the company’s word for how good the product is. He even made reference to PubMed and its usefulness as a resource. I have used PubMed many times and many of the papers in our repository have come from there so it was reassuring to hear it referenced given the context of the presentation.

We are doing some further research on the supplement, but I think it is safe to say that we will be giving it a try with K. The research indicates that it will address some of K’s physiological challenges; oxidative stress (as indicated by various blood tests he’s had), improved immune function (there is no downside to this), and system detoxification (K takes 300mg of Tegretol daily- a drug that can be hard on the liver). We just need to confirm that it does not contain any casein, or at least an insignificant amount due to K being on the GFCF diet. Also, that their are no contra-indications with his anti-seizure medication.

I received some research on Immunocal and have put it in the documents section as well as linked to it below. I will also include some links to PubMed information I read previously on the product.

• Immunocal in the Compendium of Pharmaceutical Specialties
• A study on the use of Immunocal in autism
• Pubmed entries specifically for Immunocal
• Effect of Immunocal on glutathione levels in athletes
• There are over 84,000 entries in PubMed relating to glutathione!

Many involve investigating the usefulness of drug therapies, but interspersed are investigations that, if performed correctly, will address much of the anecdotal evidence that is related time and again in parental testimonials. Some have been through scientific investigation before, but it is good to see them being revisited, like the impact of GFCF diets. We have always had the opinion that this has had the single biggest impact on K and his success.

That, I know, is a fairly significant statement and to have my intent fully understood needs to be considered in a broader context. I think after my above statement it is also important to mention that this is in no way meant to detract from all the hard work that K has done with his exceptional team of therapy providers. I in no way mean to take away from, or minimize all that they have done for him. They have been instrumental in his progress and we would be lost without them and K would undoubtedly not be thriving without their unwavering commitment to him.

The salient point I feel, and I will not comment for Tracy, is that had we not removed gluten and dairy from K’s diet he would not have been able to get as much out of all his therapy sessions. The GFCF diet has primed him for the success that he has been experiencing and allowed him to maximize all his interventions and, in the process, better tap into his potential. In reality, I realize there is no way to know this for sure and this is just our impression, but it is not founded on whim but on our experience with K before and after modifying his diet.

This last point, I think, is key and is all too often dismissed by those who think the only useful, or factual, information is that which is found in scientific studies. Scientific research is very important and I am not trying to say otherwise (I have an undergraduate degree in the biological sciences so skepticism, research, and the scientific method are all things I subscribe to) but personal anecdotal evidence should not be discredited based on its lack of “hard” data. Research deals in statistical analysis and just because something is not found to be significant in the statistical sense does not directly translate into a lack of significance in the real world sense. There will always be those that are outliers and for these people, the results can be dramatic. My emphasis is meant as a reminder that the numbers represent people and that very pertinent fact should not be forgotten. If a given treatment can have beneficial results for some, even if that number is not statistically significant, that point should be mentioned and not minimized. What may be statistically insignificant for many can be profoundly significant for a few, and then there are the gradations between the extremes that can also go overlooked. As I have mentioned before in other posts, it is important to keep your options, and your minds, open when it comes to looking for successful ways to help your autistic child.

Shortly after moving him to the GFCF diet we noticed a significant change in his behaviour and the appearance of previously absent behaviours as well as a more interactive, “present” child who appeared to be “with us” more than in the past. I will not delve into the theories behind why the GFCF diet works as there is copious material to be found with very simple research but it truly was as if a “fog” had been lifted from K’s mental processes and awareness. I think that it was this new found clear-headedness that allowed him to absorb and process what was going on in his intervention sessions. His therapists did not have to work as hard to engage him, though this can still be problematic at times just like with any typical child, and they could focus on learning and not on trying to get his attention and therefore the sessions were, overall, more productive.

One other point that I would like to make is that in pursuing any dietary interventions it is fundamentally important to ensure your child is receiving adequate nutrition. Shortly after starting K’s GFCF diet we kept a very detailed log of everything he consumed in a day for 2 weeks. We then met with a dietician and discussed his food journal and his diet and made sure that he was receiving adequate nutrition. I cannot stress this enough as it is critical to ensure you are not replacing one problem with another, potentially more harmful, one.

We have some research information in our documents repository that has looked at the “outcomes” of dietary modification as an intervention in autism and many are contrary to my point but they are a good source of information and provide a counterpoint to my personal perspective. As always, comments are welcome.

Some links to our repository that contain information on GFCF diet:
Review of GFCF diet in Autism
Another review of GFCF diet in Autism
Diet and child behaviour problems
Registered dietician’s insights on dietary treatments in autism
Intestinal pathophysiology in autism

Here is some information I have shared from our google reader page:
GFCF diet on google reader
Another media article

I also found some very useful discussion in the comments section of a post on another blog I read. It makes some other very good points regarding diet and children’s behaviour that are very relevant, but I have been verbose enough already. Therefore this should not be considered merely in the context of autism but really in the broader scope of general health.