In addition, Dr. Morris was able to gather laboratory analyses in 26 of the children, which revealed low carnitine levels, abnormal celiac panels, gluten sensitivity, and vitamin D deficiency among others. All children genetically screened carried an HLA gene associated with gluten sensitivity and celiac disease. “The sample size is still small and should be interpreted with caution,” says Dr. Morris. “However this is of particular interest given the recent publication by Eaton and colleagues in the July 6 online edition of Pediatrics demonstrating a greater than 3-fold risk of autism in children born to mothers diagnosed with celiac disease. This brings some credibility to the anecdotal reports of gastrointestinal and behavioral improvements in children with autism spectrum disorders and/or verbal apraxia when eliminating gluten from their diets.

The full story can be read here to ensure context.  Perhaps our thoughts on K’s results on the GFCF diet are legitimate after all and not just a figment of our “hopeful” imagination.

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!