GFCF Diet Perspectives

Disclaimer:  The content on this website is not to be taken as medical advice.  Consult with your medical practitioner for all medical advice.  Dietitians & Diet Counselors names are posted upon request.  Individual opinions may not be endorsed by The GFCF Diet Support Group.

Here is a simply written explanation of why the GFCF diet may help autistic children.

The theory is that many if not all autistic children  have a damaged intestine/gut. The damage may be there from birth but more likely comes from some immunological  injury like a bad reaction to an immunization.  (keep in mind this is mostly theory). Autistic children seem to have weaker immune systems, and a lot seem to have digestive problems.

This "leaky gut" allows some food proteins to pass through into the bloodstream only partially digested, particularly the gluten from wheat/oats/rye/barley, and the casein from milk and other dairy products. These partially digested proteins form peptides which have an opiate-like affect (opioids is another term for them). They can bind to the receptors and cause harmful effects in the brain  just like a regular opiate. Opiates can either cause or magnify autistic symptoms. The opiates are a type of narcotic.  There are receptors in the brain that they bind with to reduce pain and induce pleasure, but they also have harmful side effects. An example of an opiate is morphine or heroin. Until it can be figured out how to heal the "leaky guts", many parents are putting their children on the gluten free/casein free diets .  By Barbara Byers 

Dietary Interventions in the Treatment of Autism Spectrum Disorders: Historical Perspectives

Paul Shattock; Autism Research unit, School of Sciences, University of Sunderland,Sunderland. SR2 7EE England
http://www.espa-research.org.uk//linked/publications.pdf

"Well, why did you decide to remove milk from your son’s diet?" I asked. "I just decided that he was worse when he drank milk - I could see it from his food diary." the young mother replied.

This conversation took place yesterday but it is one of dozens of similar ones I have had over the years. Parents, especially mothers, are primed, by instinct, to notice such things whereas  orthodox  researchers are trained to eradicate any form of instinctive element from their studies. Which group is the better in terms of science?

These mothers have made an observation. (These foods make their children worse in some way.) They have formed a hypothesis. (Something in the foods is causing these problems.) They have designed an experiment to test the hypothesis. (Take the food out of the diet; see what happens; put it back in and see what happens.) and they have told others about their work. This would seem to constitute perfect science. 

Many of us parents of children with autism have seen the curtain come down in the eyes of our beloved sons and daughters. We have seen our children slip away from us and have instinctively felt that these changes could be the consequence of some toxic event. Yet our views have attracted no support from funded research programs which have been dominated by genetic and psychologically based studies which, to a greater or lesser extent, evoke a "So what?" response from parents. That we have progressed at all is testimony to the steadfastness maintained by those many parents and pitifully few professionals who have believed the evidence of their own eyes and experience and ignored the prevailing dogma and fear of innovation which characterizes much of what masquerades as research. Rather that address the real problems faced by severely handicapped people, these funded agencies have sought the plaudits of their own peers and funding bodies.

It was in the mid and late 60s that Dohan started suggesting that the ingestion of wheat be a causative factor in schizophrenia. Admittedly his evidence was more circumstantial than anything else but his observations were sound and his conclusions, probably, valid. In the early 70s peptides with morphine like activity were found as normal physiological products in human beings. On account of their activity, these compounds were called "endogenous morphines" or "endorphins". The best known of these is probably beta- endorphin which attracted much activity and research interest in the late 70s.

It was in 1979 that Jaak Panksepp published his paper which first drew attention to the similarities between the symptoms of autism and the effects of beta-endorphin in humans (and animals). Although Jaak is a world renowned authority on animal behaviors it was a fortunate coincidence that led him to work with people studying autism and this led to his observations. On a personal level, it was reading this paper that riveted my attention to this approach. So many of the things I saw in my son could be explained in terms of an "opioid excess" theory. Jaak’s contribution was hugely important and, since that time, his interest and enthusiasm has never faltered. Jaak established a trust fund "The Lost Children" to assist research in this area. He did this in memory of his beautiful 16 year old daughter who was killed in a driving accident involving a drunken driver.

In the early 80s another of our heroes, Dr. Karl  Reichelt, began publishing his series of papers which contained elements from these two threads. His papers remain seminal but were very controversial for a number of reasons. As previously stated, Dohan’s work had not endeared him to the medical establishment and he and his work had attracted criticism. Reichelt’s first paper, which included evidence supportive of Dohan’s hypotheses was published on the very day that Dohan died. It is said that Dohan had a copy of this paper on his deathbed. I hope that it is true and that he died in the knowledge that his revolutionary ideas would be vindicated.

Reichelt extended the hypotheses from schizophrenia into the realm of autism. He demonstrated differences in the urinary peptide content in people with autism when compared to normal controls. His method, molecular sieving, was theoretically elegant but technically rather tricky. The three teams around the world, including ourselves, who attempted replication all failed. Reichelt described two basic types of pattern. One of these corresponded with those children where the onset of the symptoms was very early (milk is taken more or less from birth) and those in which the onset is later (wheat/gluten only enters the diet later in life).

I remember a "vigorous debate" at an international conference back in 1986. We reported negative results from our replication attempt and felt that his methodology was flawed. In spite of his nickname, "Tiny" Reichelt is a giant of a man and he appeared even larger in his famous bright red shirt. He suggested, from his seat in the audience, that our technical abilities were less than adequate. I recall that "buckets" and "kitchen sinks" were mentioned and the discussion provided a memorable highlight of the conference. The BBC phoned me, a couple of days later, for information about this argument but I persuaded them that this incident was usual and was no more than the normal cut and thrust of academic debate. It was only Tiny’s transparent honesty and obvious integrity which encouraged us to continue with our (failed) studies. However, we had begun to lose confidence in his method and so switched to a more modern High Performance Liquid Chromatographic (HPLC) based method.

It was soon after this that the "flaw" in the Reichelt method became apparent. One of the reagents he was using in Norway was, unknown to Reichelt, heavily contaminated with other substances. Once we became aware of this we were able to obtain results similar to those he had obtained but we decided against using his older, more cumbersome, method.

It was at about this time that Robert Cade, the inventor of "Gatorade" began utilizing Reichelt’s method and to obtain meaningful results.

The whole incident is worthy of note for two reasons. Firstly, since no-one had been able to replicate his work in the early days, the whole concept fell into doubt and disrepute and these rumblings still continue in many academic circles. The other factor is that Reichelt’s studies only worked because of the heavy contamination of one of his solvents. Had the solvent been pure, no positive results whatsoever would have been achieved and the whole concept stillborn.

In the late 80s the Norwegians, under the guidance of Anne-Marie Knivsberg, published the first studies of the effectiveness of gluten and casein free diets in the amelioration of the symptoms of autism but these were largely ignored.

At this time, we were performing our own studies but it was interesting that we (like the Norwegians) were never invited to present our work at conferences. There was little we could do except to hold our own conference and, rather unsurprisingly, I (together with the Norwegians) was invited to speak. This was in 1988 and we have held these conferences in Durham University (England) on an annual basis ever since. We were stunned by the quality of the participants especially as no speakers were subsidized in any way (a feature we still maintain). Panksepp came; The Norwegians came and representatives of all of our favorite research groups in France; Holland; Italy and the USA attended. To this day, we have all remained very firm friends. The rivalry which exists in other areas of research is utterly absent amongst our groups.

We began publishing (on a formal basis) our HPLC based data in 1990. Looking back, many of these papers were a little naive in some respects but they did put the information into the public domain.

Another group to whom we must pay tribute is the UK based parent group called "Allergy Induced Autism" or AiA. It is universally accepted that the name is a little misleading but this small group of untrained mothers (Brenda O’Reilly; Meryl Nee and Rosemary Kessick) had, and continue to have, a great influence in research in these areas. It was this group that identified the problems with sulphation which may well underlie many of the problems of autism. They "persuaded" Rosemary Waring to undertake studies in this area.

Using similar methods of persuasion, these women co-erced Andy Wakefield to begin his investigations into the links between the combined Measles, Mumps and Rubella (MMR) vaccine and the causation of autism. 

So far, I have concentrated on European studies because that is where most of the action took place in the early days. However, many American parents had been quietly using these techniques but they had been doing so in such a way as to avoid attention. A browse through any textbooks on autism will show just what the medical view of such experiments was (total ignorance). The Godfather figure of Bernie Rimland has been there from the beginning and, in fact, Bernie did produce a monograph in the mid 70s in which he discussed the place of these exclusion diets in autism. In early 1995 Bernie assembled a group of researchers (including Tiny, Rosemary Waring and me) as part of his study group. With that subtle understatement which characterizes the American, he called it "Defeat Autism Now" and he has done much to disseminate information on this and other complementary approaches.

In my opinion, the most important factor in spreading information about these approaches has been the internet and, in particular, the St. Johns based Autism discussion group. I first joined this list in May 1994 and I arrived at the tail end of a "vigorous debate" between Italians, including my very good friend Pierluigi Fortini, and Americans. Fortini was espousing the effectiveness of gluten and casein free diets but some of the responses from the US were very hostile and downright offensive. However, some of the parents were very interested in this approach.

I entered the debate on-line.  Most of best friends I met through the internet and I have learned more from these discussion groups than any other source. I do wonder where research would be without it. We would probably be involved in the same sterile studies which characterize many other areas of research.

Things are changing very fast now. These weird ideas are becoming more orthodox. Last week the British Dietitians Association journal contained an exceptionally good piece about diet. At the last DAN meeting there were many companies providing nutritional supplements for "Autism". The recent work of Cade and from Alan Friedman are providing powerful evidence which is difficult if not impossible to rebut. 

I pay tribute to all the parents and professionals who have maintained a mind sufficiently open to consider dietary interventions.


The following is Dr. Paul Shattock's explanation of why we see the reactions we do from our children as we follow the course of a GFCF diet.  Of course we are learning about the effects of removing gluten from the diet all the time and certainly are nowhere near understanding all the consequences or processes involved.

We expect to see the effect that T. M. described after a period of time. When the person first goes gluten (or casein) free we do seem to get these exaggerated responses when infringements occur. Then, after a period of time - 3 months to two years depending upon the individuals - this doesn't happen any more and the odd infringement may disappear. What surprised us more was the exaggerated almost "allergic" response in the early days. I know we always accentuate the effects being basically of toxicity rather than allergy but there are low levels of anti gliadin and anti casein antibodies circulating in the blood of our children. In the absence of continual gluten challenge they will diminish over time and infringements would not result in allergic type responses at all. At the same time, we visualize the situation as follows. The body cannot break down these peptides yet they are absorbed into the blood stream and dumped as quickly as possible into the urine. This rate of dumping is finite so levels build up and the peptides are stored in the tissues of the body.  In the Celiac literature it talks of gliadin/antibody complexes persisting in the tissues for up to seven years. So, why not in autism? (note: Celiac patients cannot consume any gluten products)

When a person goes GF/CF the body takes the opportunity to dump these things in the blood/urine again. That is why we see them in the urine for some time afterwards and why GF/CF adults do not go "cold turkey" and have more drawn out but milder side effects. Little children do, more or less, go "cold turkey" as they don't have these levels in their systems to make the decrease more gradual. That's why these little ones have such serious withdrawal effects but they don't last long.

One of the major milk peaks (beta casomorphin 1-7) almost disappears from the peptide profiles within about two days after CF and re-appears just as quickly when milk is reintroduced. We believe that a lot of people with autism have sort of spotted this and know that milk makes them feel funny so don't touch the stuff. With wheat it is more insidious so tends not to get noticed.

The following is written by Dr. Jeff Bradstreet
 http://www.icdrc.org/index.html

If you look at the available medical literature, there are at least three highly reputable sources for the benefits of removing certain dietary items (gluten and casein) from the diet of children with autism. In the studies of Cade*, Reichelt* and Shattock*, approximately 80% of autistics are significantly improved (not synonymous with cured) by the STRICT removal of gluten and casein.  A 100% gluten and casein free diet. Sorry, but 99% free doesn't count.  This means no: milk products, wheat, barley, oats, spelt or rye flours. (It is tough to do because most autistic children are fully addicted to the stuff - but there is enough emperic data and clinical observation to justify the one year trial). Dr. Paul Shattock at the University of Sunderland in the UK has tracked the urine of children with autism and found it takes up to one year to remove all the caseomorphine and glaidomorphine.

Observe behavior during the wash out. Be aware that many family members and well intentioned friends or teachers have the idea that "just a little won't hurt". This is wrong and there is good data to support why this is true, but if you really want to know if this is what is making your child autistic, then you must really police this.