[The following comment is to help you understand the complexities of choosing one diet over another, combining them, or interpreting lab results correctly. Because of the complexity of the problem, the comment is given for educational purposes. However, you will need to discuss the specific application(s) with your clinician.]
Frequently Dr. Neubrander is asked what diet is the best or in what order the diets should be added. Please note that diets are an individualized thing and there is no simple answer. A few general rules that will apply to most patients the majority of the time (with major exceptions, of course!) are as follows: Begin with the GFCF diet first and observe for clinical benefits. The next diet is usually the SCD followed by the diets that eliminate special foods (elimination and rotation), food chemicals, e.g. phenolics, salicylates, glutamates, excitotoxins, etc. This can be followed by a “limited” low oxalate diet (not yet strict), the Body Ecology diet or the GAPS diet (Gut and Psychology Syndrome diet). The last diet many parents move to is a very “strict” low oxalate diet. NOTE THAT THERE IS NO ‘PERFECT ORDER’ AND DIFFERENT CHILDREN WOULD DO BETTER TO SWITCH THE ORDER. This is something that parents and their clinician could do together, though more often than not parents experiment on their own as they watch what works and what does not work for their child.
As stated, there are reasons that a child may need to skip over “the next usual diet to be added” to go farther down the list. These “skips” or “exceptions” are usually based on a child’s symptoms, a discussion too big and too specific to be covered in this comment. Trial and error is the tried and true method. Lab tests are very often misleading and confusing. In addition, lab tests are not always available for many of the different “mechanisms of action” that may be operative. Even if a lab test was possible to do, because there are so many different lab tests to look at all the different mechanisms — IgE “true” food allergy, IgG non-allergic “delayed” hypersensitivity, difficulty breaking down peptides, gastrointestinal enzymatic deficiencies, cytotoxicity, direct chemical reactions, toxic or intolerance reactions to food components or contaminants, etc — it is financially impossible and impractical to do them all. Therefore, the CLINICAL TRIAL IS THE BODY’S BEST LAB TEST, but only if done in a systematic and progressive manner.
In general the casein-free, gluten-free diet helps over 60% of children on the autism spectrum according to ARI data. Though such a diet has been historically mocked by our detractors as unproven, unhealthy, and ineffective, as time marches on more and more peer reviewed articles are appearing in respectable journals documenting this diet works for a significant subset of the children on the spectrum. The reasons discussed in the published papers why this diet works has a spectrum of its own ranging all the way from “unknown but definite” to “gastrointestinal” all the way to “immunological” reasons. One recently described but definite reason that milk may be playing a negative role in children on the spectrum is because of a cerebral folate deficiency. In the “absolute” deficiency syndrome there is an autoimmune reaction whereby the body produces antibodies against the folate receptors found at the choroid plexus, thus blocking the body’s ability to get reduced folic acid molecules across the blood brain barrier into the cerebral spinal fluid and ultimately into the neurons. It is becoming apparent that every child does not need to meet the criteria to be diagnosed with an “absolute” cerebral folate deficiency to be suffering similar negative neurological symptoms due to a “partial or incomplete” blockade of the same biochemical pathway. Cerebral folate deficiency studies show that when milk is present, the blocking antibodies rise, that when milk is taken out of a child’s diet the blocking antibodies fall substantially, and that when milk is reintroduced, the blocking antibodies once again rise very quickly! Research also shows that the longer one is exposed to milk, the higher the antibody levels become. Of special interest at the time of this post (August 2011) is that out of the 120 children we have tested so far in our clinic for folate receptor autoantibodies, 2/3 of them (65.8%) have been positive to either the blocking and/or binding folate receptor autoantibodies. Of even greater interest is that we can often do something to treat the problem effectively, occasionally even to the ‘Wow-degree’!
What is not well understood is that there are many different “mechanisms” as to why a certain food may cause problems in different subsets of individuals that look alike and have the same types of symptoms. Let’s use casein as one good example. Some patients cannot tolerate casein well because of the “OPIOID” MECHANISM which causes a drug-like reaction. This opioid-like phenomenon is due to the inability of “specific” enzymes that break down key bonds that occur between the molecules holding together certain parts of a casein molecule [also certain parts of a gluten molecule]. Therefore, “if” a patient lacks this specific enzyme, DPPIV ["DPP-four"], casein may not be broken down into its smallest common denominator (single amino acids named “peptides”) and thus remain as polypeptides or “dipeptides,” which are then absorbed and subsequently “misread” by the body’s opioid receptors with which they cross react as opioids [morphine-like drugs]. This “OPIOID REACTION” to casein/milk products is only “ONE SPECIFIC MECHANISM” to a host of mechanisms why dairy may not be good for a certain subset of children. The “ADENOSINE CONNECTION” is “ANOTHER SPECIFIC MECHANISM” whereby dairy products from milk (not eggs), acting through the DPPIV pathway, blocks the effectiveness of methyl-B12.
“ANOTHER SPECIFIC MECHANISM” why some children will do better without dairy products is because the child may have “TRUE FOOD ALLERGIES”, e.g. the IgE antibody response [accepted by all conventionally trained physicians]. Still “ANOTHER SPECIFIC MECHANISM” why some children will do better without dairy products is because the child may have “FOOD SENSITIVITIES/INTOLERANCES” e.g. the IgG antibody response [accepted by most alternative medicine practitioners but only a small percentage of conventionally trained physicians]. “ANOTHER SPECIFIC MECHANISM” would include AN ABNORMAL CYTOTOXIC RESPONSE when the nuclei of cells are directly incubated with casein. When this is done, the nuclei “get angry” by taking in a lot more blue dye and the nuclei look just like the sky before a thunderstorm instead of a pretty blue sky on a summer day. Still “ANOTHER SPECIFIC MECHANISM” would include LACTOSE INTOLERANCE whereby “a different enzyme” than the one described above cannot break down milk sugar. When this happens, the undigested milk sugar bypasses absorption in the small intestine and travels down to the large intestine where bacteria and yeast say, “Yippee, beer and pretzel time!” and have a party on the front lawn of the large intestine. Unfortunately the byproducts of bacteria and yeast being “overfed” is the production of hydrogen and methane gases resulting in the child feeling bloated, having flatulence, and possibly abdominal pain.
Many similar mechanisms are happening with a child that may be better on a gluten-free diet, e.g. the DPPIV opiod-mechanism, the IgE and IgG mechanisms, and the cytotoxic mechanism. An ADDITIONAL MECHANISM comes into play with gluten, that being the AUTOIMMUNE PHENOMENON known as CELIAC DISEASE. In this disorder the body makes an antibody against its own intestinal mucosa. The mucosal lining becomes damaged and therefore the absorptive surface becomes compromised which impairs the body’s ability to absorb. This can be pictured by opening one’s hand to observe the fingers and knuckles which we will define as absorptive surfaces. When antibodies destroy the surface lining, picture this by making a fist. Now compare the two – the first one has a tremendous surface area while the second one has very little. So it is with celiac disease.
A popular diet right now for children on the autistic spectrum is the Specific Carbohydrate Diet (SCD). The “mechanism” at work in this diet is still another enzyme deficiency — a specific class of enzymes that are supposed to break down starches or “two-part, two-molecule sugars.” The food classification known as “carbohydrate” is comprised of individual biochemical units known as sugars [these are "biochemical sugars" that are not the same as the lay term "sugar"]. These biochemical sugar molecules have common names, e.g. glucose, fructose, and galactose. Biochemically these individual units of biochemical sugars are called mono ["one"] saccharides ["sugar molecule"]. When two of these individual sugar molecules are combined, they are now called dissacharides ["two" "sugar molecules"]. When a single “glucose” biochemical sugar molecule combines with a single “galactose” biochemical sugar molecule, the result is the disaccharide lactose, commonly known as “milk sugar.” When a single glucose biochemical sugar molecule combines with a single fructose biochemical sugar molecule, the result is the disaccharide commonly known as “fruit sugar.” When a single glucose biochemical sugar molecule combines with another single glucose biochemical sugar molecule, the result is the disaccharide commonly known as a “starch.” Clinically it seems that there is a subclassification of enzymes that is unable to break down the “starchy” disaccharides [names like isomaltase -- a disaccharidase; palitinase -- a dissacharidase, etc]. These types of disaccharidases are especially hard on the intestinal tract [remember "ase" added to the end of a word just means an enzyme that digests the similarly named substrate, e.g. lactase digests the substrate lactose, etc.]. By simply removing these “relatively hotter disaccharides” from a child’s diet, the child may improve significantly.
Other diets include elimination diets based on “true allergy tests — IgE tests,” on “intolerance/sensitivity allergy tests — IgG tests,” “cytotoxic sensitivity tests — lymphoblastic activation,” or “chemical reactions to food substances,” e.g. the Feingold diet and other similar diets, “metabolic disorders,” e.g. avoidance of foods containing items like phenols, sulfur pathway offenders, tyramines, nightshades, the oxalate diet, etc. Each of these diets may work because of single mechanisms or alternatively because of combined synergistic mechanisms working together.
PLEASE NOTE THAT THE SINGLE MOST VALUABLE LABORATORY TEST is a child’s specific reaction to the introduction, restriction, and then reintroduction of a potentially offending substance. Therefore, When In Doubt, Cut It Out of the child’s diet and observe clinically for results. Understand that the removal of an item may not give clinical results that are easily observable. However, with the reintroduction of the food, symptoms or decompensation may then occur.
The only real exception to the general principle stated above is to the “big baddies,” things that are known to be life-threatening, things like peanuts, shrimp, etc. These are true IgE allergies and could have serious consequences if not respected. To these substances one should not consider reintroducing them just to see if the child has improved or can tolerate the substance or not. The problem is that if reintroduced, two things could happen. With the first reintroduction after being off the food for a period of time, the body may not have an outward reaction, though internally the body will lose what was a “temporary amnesic response” because it had avoided the food for a long period of time while it sets itself up for a serious reaction should the food be ingested again within a relatively short period of time. The second thing that could happen is that the child may react to the first reintroduction of the food and have a potentially life-threatening anaphylactic emergency.
Remember that each child is different and that each diet is different. The best way to determine when to start and when to stop a diet will be different, one child to the next. Therefore I always recommend professional help in these matters. As is standard for my practice, if I believe a result to starting a diet could be “very important,” or have significant benefits or side effects, I will recommend that the diet be started at a time when no other variables are being added or removed from the child’s program. The same general principle applies to the discontinuation of a diet.
Diets are very frustrating, no doubt. They are not “The American Way”! The right diet is not easy to find. And no diet is ever easy to do. It takes commitment by the parents and alters the family’s lifestyle, one of the hardest things for all of us to do – change! However, diets are worth investigating by every parent because when the correct diet is found, many of the troublesome symptoms associated with the autism spectrum will diminish or disappear completely~! Good luck on your journey. We are here to help you in any way we can along the way.