Possible Link Between Autism, Schizophrenia And Diet

Very interesting. I hope something useful comes out of this.

As I’ve mentioned before, I’m on a gluten-free and milk-free diet due to celiac disease. I also raised my daughter without cow’s milk and later whole wheat products because she reacts badly. Difficult but possible.

A thought about the increasing incidence of autism: IF (and always a big if) the diet connection is established, this may parallel the resent increase in early introduction of untreated milk into children’s diets, the rise in use of “Health foods” which include a lot of whole wheat (healthy for those of you who can digest it, deadly poisons to some others of us) and the decrease in breast-feeding. No guarantees but an interesting thought.

Have you tried taking milk and gluten out of your son’s diet?

Yes, and my boy did not give evidence of any changes by either removal of the targeted proteins, or by using digestive enzymes to assist in breaking them down. We did however have a good deal of improvement chelating him first for lead and then for mercury.

My older non-ld child has IBD and a few years ago when she was severely ill we went through about two years of dietary restrictions (no lactose, no sugar, no grains whatsoever — it was extremely restrictive). Every time we made a change (in diet, herbs, meds, you name it) it would have a slight placebo effect, but we were never able to effect any great measurable improvement. Not that I wouldn’t try again if I had it to do over! We were quite desperate at the time.

Dad, how do you chelate a child for lead and mercury?

Laura in CA

I heard Dr. Cade speak at a Feingold Conference about eight years ago. I even had the pleasure of sitting next to him at dinner.

This is how he got started researching in this area.

“Origin of the Research

Our study of mental disorders began many years ago when we discovered that one of our patients who suffered from schitzophrenia as well as kidney disease actually stopped hearing voices when we initiated dialysis. We determined that it was the removal of endorphins and exorphins from her blood that was leading to the improvement.
That discovery was the trigger that has launched 35 years of research into the cause and treatment of schitzophrenia and subsequently, autism.”

http://www.autism-diet.com/research.html

Dad — very serious question here. How long did you try the diet, and how serious were you about examining every label and every treat?

Having celiac disease, I have found that it takes a long time for the body to repair itself, weeks and more. I have also found the number of hidden chemicals in most prepared foods to be astounding, and one bite of a “treat” can lead to trouble for days or weeks.

“Natural flavouring” for one example, usually means a meat-like flavour manufactured from, guess what, wheat. So all canned soups are out just for one thing. I also react negatively to chlorinated water so no drinks I don’t bring with me and to artificially-added citric acid so no commercial fruit products.

My daughter has an early form of the same intolerances, and I had a running battle with her daycares and schools and activity leaders who found it easier to tell her to lie to me than to give her her own bottled water or soy ice cream or other alternatives. This makes it hard to know whether a diet is doing any good or not if it is being constantly sabotaged, besides the problem of having your child taught to lie to you.

It takes a serious effort to get the milk-free and gluten-free diet working, a few months just to get it all organized, and then eternal vigilance to keep it going. Any mistakes can put you back for a week or more. If you didn’t give it this long, it might be worth trying again especially in summer with less school interference.

Victoria - Most of the food that we prepare is not pre-processed anyway. We use fresh meats, fresh or frozen vegetables, etc. The one routine exception is of course breakfast cereal. Prior to initiating our attempt at the Diet we had him tested for Celiac’s (negative) among other things. I also had logged numerous hours talking with dozens of parents about their experiences, so I didn’t go into this exactly blind. ;)

My boy did not exhibit some of the behavioral signs of LGS (which is different from Celiac’s in some profound metabolic ways). For instance, he does not crave dairy, and with little prompting is almost completely milk free, going so far as to skin the cheese off of his pizza before eating it.

We tried the Diet first by eliminating all casein, because that is the easier of the two for about 2 weeks, the common threshhold based upon conversations with all those other parents. There was zero change in his behavior. We tried challenge - rechallenge with no effect.

Beta-casein-7 has been studied in the lab prior to any talk amongst mainstream researchers about LGS, and it is the peptide most strongly associated with stimming activity. Common experiece has supported that casein peptide will clear the body within two weeks when elimination diet is used; the gluten peptides by contrast can take months to clear (whether this is because they are harder to eliminate or because gluten is just far more prevalanet in our overall food supply and is inadvertantly consumed unknowingly by people less than 100% vigilant is still up in the air).

We did press on with gluten removal, which was both extremely difficult as well as expensive. We purchased the foods we could not buy rotinely which are gluten free (i.e. meat, vegetables and fruits) at a store which specializes in supplying people with Celiac’s (and I also suspect enjoying it’s “monopoly” to charge a premium). Again, we had no discernable changes in behavior (other than his dismay at not getting 3 of his favorite foods anymore.) As you mention, “food starch” which is almost perfectly synonomous with wheat gluten is literally in everything that is not raw ingredients, including a good many seasonings and many foods you would never suspect.

We were only able to stick to this for about 3 weeks, which I realise full-well was not enough time for gluten to be fully eliminated. However, almost without fail all the parents we had talked to said that they noticed a change within 2 week an it just got better after that. Also, we tried the challenge-rechallenge by deliberately giving him “bad food” to see if we could see the regression that would be associated with flooding the body with the offending peptides, and again there was no change in his behaviors.

Two years after this “experiment”, we tried to address the problem the other way by trying dietary enzymes. There are several companies which produce enzymes formulated to address short protein breakdown, with Kirkman’s and Houston”s being the ones which target the autistic population. After several weeks of discussion with parents and adults on Spectrum who used these, we went with Houston’s, and ordered a two month supply. We dutifully gave them with every meal whether or not we thought it contained either grain or dairy, and again there was no discernable effect on him.

Generally speaking, it is thought that somewhere between 25 and 40% of today’s autistic kids have LGS. We feel that based upon our experience, my boy falls in the larger group which do not have this problem. When mainstream science catches up with the theories and experiences of the maverick’s on this cutting edge and developes a reliable testing process so determining the need for intervention becomes less hit-and-miss we will consider trying again. But our experience with this personally was all pain, no gain.

Laura - Chelation is the process of using a chemical to bind to an offending chemical to allow the body to eliminate it. It has been around for at least 65 years now, with DMSA having been developed by the British to treat sailors who got elevated lead from scraping the isdes of ships. There are 3 accepted medicines which are used for various reasons to do this: DMSA, DMPS and EDTA.

DMSA and DMPS are both sulfur based, so right off the bat if you are allergic to sulfer medications they are out. EDTA is calcium based. Of the 3, DMSA is the safest according to adverse event reporting, and it is what we used because it is what is recommended for lead. We had a very successful experience with this, completing 8 rounds following the standard lead protocol.

SMPS works better with mercury than DMSA, but since my boy did not have testable mercury (which is not surprising since mercury clears the blood within a couple of weeks, but can linger in the nervous system for years, unlike lead which will always remain circulating in the blood at a point of balance with what is stored in the bone marrow).

EDTA has the worst record for both safety and efficacy, and is most commonly used intravenously because of its very poor uptake orally (thought to be slighly under 20%). The process for EDTA is not unlike dialysis, and because of the safety questions, it is usually reserved for those patients with extremely high levels, most commonly found in industrial exposures.

Unlike the Diet, which can be tried with relative safety (regardless of what some people will claim, the human body does not need to eat either milk products or grains to be healthy, plenty of other foods can supply the nutrition we need.), chelation is a medical process that absolutely requires working with a competant physician to monitor progress and watch for trouble. There have been some problems associated with chelation, the most common of which stem from the fact that the chelating drugs strip good metals like zinc, calcium, magnesium, etc. along with the bad. In between rounds, when the body is “resting” it is important to supplement with key minerals to bring them back up or you can have health problems from it.

I have taking more than a few beatings from chelation “zealots” who claim the protocol we followed in insane and dangerous. I did not follow either the DAN! protocol or the protools employed by Dr. Holmes or Dr. Cutler, but used the standard lead protocol as outlined by US and European health official based upon nearly 7 decades of practice. We saw nothing but good come out of our experience, and did not see the most common side effect reported by parents - stimulation of yeast overgrowth in the gut leading to subsequent regression in behaviors and cognition as well as an increase in gut issues. I do not think that is the result of the protocol per se, but is more likely due to the fact my boy is in the sub-group of auties who does not have the underlying gut issues to begin with. (But you can’t make the zealots understand that not all auties have the same metabolic problems.)

For far more information about chelation, see the yahoo group autism-mercury. There are over 3,000 parents and adults on Spectrum there who have successful experience removing toxic metals from themselves and their children.

Dad,
Did you have your son tested for high levels of lead and mercury prior to chelation? Can a pediatrician do this type of testing? What is LGS? My son likes milk quite a lot (particularly chocolate milk!). When he was younger he would forego meals and we’d comment on how it seemed like he “lived” on milk.

Lead can be tested for by a simple blood draw. Lead stores in the fatty tissue and especially the bone marrow, but some lead stays free in the blood at a point of balance.

Mercury however does not stay free in the blood like this. Mercury stores in the organs of the digestive track and central nervous system. In a person with a normally functioning metabolic system, the blood life for mercury is measured in weeks, the organ life of mercury is measured in years. The only sure way to test for mercury is to take DMPS for about 3 days and do a 12 hour urine collection to see what is coming out.

When I first got started on my “job” of finding answers to the questions my boy’s autism posed, the two consistant things I read online was “gfcf diet” and “high levels of toxic metals”. I asked repeatedly for my boy to be tested, and kept getting the brush off until finally I went in to the pediatrician and in no uncertain terms told them that yes they ere going to test my boy, I was paying their salary, that made me the boss in this situation. Afterthey did and he came back at 26.4, all hell broke loose (looking back, I should have sued them for negligence; although I am not one to play “litigation lotto”, I probably had as justifiable case as anyone could and the money could have paid for a proper ABA program which would have rgeatly benefitted my boy.)

To put his level of lead in perspective, a reading of 10 is still the (arbitrary) threshhold for “safe”, and 45 would have gotten him a bed in the hospitoal for immediate blood cleansing using IV EDTA. So he was about halfwy to hell, if you follow me.

I do not advocate anyone trying a procedure like chelation in the absence of demonstrated need or without having the cooperation and oversight of a competant physician. Having your child screened for lead, mercury, arsenic, antimony, aluminum, tin and copper is the first step.

LGS is leaky gut syndrome. In a nutshell, the lining of the small intestine becomes damaged from colonies of viruses or yeast allowing improperly digested long-chain peptides of gluten and casein to enter the blood stream (normally these remain in the intestine until the process of digestion into amino acids is complete). These peptides will bind to receptors in the brain whcih cause cognition and behavioral changes, and circulate in the body until they are eliminated by the kidneys.

It differs from Celiac’s in that tere is no antibody formation to gluten, so there is no reliable test for it. The only thing you can do is try the dietary challenge and see if imrpvements can be seen after the body cleans itself of the bad stuff. Casein peptides clear in quantities sufficient to notice changes within two weeks, give or take, glute takes a bit longer, as much as a couple months. Using the Diet is tricky at best, and is expnsive to maintain and requires 100% vigilence. You cannot allow any foods with the proteins casein (as opposed to lactose, which is a sugar) or gluten (wheat, malt, barley, and several other grains) in them. Corn has a different protein in it, and only a small handful of children with LGS cannot tolerate it as well, this is likely an unrelated food intolerance. Rice is almost universally ok.

Included in the list of verboten foods is nearly ALL pre-processed foods, as “food starch” means wheat gluten, and is used as a binding agent in nearly everything that comes in a box or frozen ready to heat up. Also, it means almost no eating in resturants, because they will use a great many ingredients which contain casein or gluten, and nearly all resturants will not have the first notion what the heck you are talking about should you ask, and will most likely tell you “there is no gluten in this” to keep forom losing the sale. For lists of allowable foods to get you started, put “GFCF diet” AND “recipes” into google and start going thru the list.

Basicaly speaking, you will be cooking everything from scratch, and unless you are willing to padlock the pantry and tease your child by eating things that he cannot have, everyone in the house must also go GFCF.

Guest, do you have an autistic child?

Dad, thanks for your comments on the gluten-free diet. I get really tired of people trying to tell me I’m nuts, and my poor daughter is not doing well since she left home and people have convinced her to eat what she shouldn’t.