I first contacted Sandra in 1996 through another parent researcher I met on an autism chat group. She passed my enquiry on to Sandra and the reply I got back was “Max is doing really well”. That was surprising, because at that time I was following a severely hypo-allergenic diet which limited me to about 30 different foods.
The next response was “the problem is lutein” along with a lot of information and recommendations for adding some foods back into my diet. I was cautious about doing this, because of what I had been through since removing gluten and casein. I had experienced a heightened sensitivity not just to foods but even to some perfumes, sprays and cleaning products.
Some of the food reactions were so horrible that I thought I was going to die. However, I took Sandra’s advice, cut out carrots from my diet which was the only lutein-containing food left, and carefully added some new foods and supplements that she recommended.
I was not the only person to experience heightened sensitivity on a GFCF diet. Reading the autism forums, I found that it was a common problem. Increased behavior problems, panic attacks, new food intolerances, Candida overgrowth and enzyme deficiences all seemed to increase, not decrease on a diet that was based on the idea that gluten and casein by-products that had a chemical structure similar to morphine were crossing through a damaged gut lining and causing autism. Sandra’s theory was very different – an immune system choice during fetal development led to lutein being targeted as a non-self pathogen. Brain imaging studies had shown that changes in the brains of people with autism could be traced back to the first trimester
At this time, the immune system has to choose a foreign substance to label as ‘non-self’. Rather than choosing an inert substance, the autistic immune system chooses lutein.
There are some signs, often overlooked, that there is a pigment disorder in children with autism. Many of the parents we talked to told us that the child was born with a yellow tint to the skin. This would commonly be labeled as bilirubinemia or jaundice. I don’t know of any studies that have looked at the incidence of yellow skin in autistic infants, but it might be worthwhile. There are photos of me as a young child with very pale, yellowish skin. Another interesting fact is that the amniotic fluid is often discolored. At one time this was seen as a marker for later developmental difficulties, but it is now rare that doctors pay any attention to this.
As the young infant is weaned and lutein-containing foods enter the diet, the immune system recognizes the foreign invader and removes it. The immune response may not be noticeable at first, but as lutein continues to come into the body and the danger of damaging high fever increases, the immune response changes from acute to chronic. One way it does this is by changes in the hormonal system, by repressing the adreno-corticotropin hormone that stimulates the adrenal “fight-or-flight” panic response and promoting the pro-opio-melanocortin hormone which has a calming effect on the immune system and the emotions. There are also changes in the enzymes that are secreted by the liver and pancreas. One interesting finding was by Dr. Rosemary Waring, who discovered a deficiency in PST-P, or phenol-sulfur-transferase-P enzyme in autists that results in a difficulty to metabolize phenols and sulfur compounds. But the findings of morphine-like compounds by Dr. Kalle Reichelt mentioned above raises an even more intriguing question – has the autistic metabolism learned how to create its own pain and fever-reducing chemicals from gluten and casein? Do they crave gluten and casein containing foods because they make them feel better? So many of the autists that we have met, both children and adults, have self-selective diets. The foods they crave are the gluten and casein containing foods and they avoid the lutein-containing fruits and vegetables. We believe that they are naturally trying to reduce the stress and discomfort of the immune response.
Autism is treatable naturally pt.1 — an asperger childhood/