Autism & Gluten Intolerance

The Relationship between Autism and Gluten: Real or Illusory?
The relationship between autism and gastrointestinal disorders was documented as early as 1967, when Bernard Rimland noted that people with autism often manifested “symptoms of gastrointestinal disorder.”   Alternating between diarrhea and constipation, in many cases undigested food is clearly visible in the stool.  In 1976 a physician named Mary Coleman studied 78 autistic individuals.  Of the 78 individuals, eight had Celiac disease—slightly over 10% of the sample.  This statistic suggests a strong relationship between autism and Celiac disease since only 1 out of 133 people in the general population has the condition.  Since that time, many research studies have been published regarding the relationship between autism and gluten intolerance.  While results have been mixed, a number of systematic reviews in the form of meta-analyses of the literature on gastrointestinal problems and ASD are now available (Erickson et al., 2005; Horvath and Perman, 2002; White, 2003).   All of these meta-analyses suggest that there is a significantly elevated presence of gastrointestinal symptomatology in autism.  Even though there are several theories as to the etiology, the pathogenesis of such an association remains largely undetermined.  It is clear, however, that the rate of gastrointestinal disturbance in people with autism is significantly higher than in the general population. Perhaps it should not be surprising that such a relationship exists, particularly when we consider that the brain and the gastrointestinal tract are both innervated by the vagus nerve which originates in the medulla oblongata, a part of the brain stem, and extends all the way down from the brain stem to the intestinal tract, as far as the transverse portion of the colon. The vagus nerve also brings sensory information back to the brain from the ear, tongue, pharynx, and larynx.  Perhaps this is why we feel “butterflies in our stomach” when we are nervous, and why diarrhea is common during anxiety.

Does a Gluten-Free Diet Improve Autistic Symptoms?
From an anecdotal perspective, parents have reported numerous improvements in their autistic children as a result of eliminating gluten from the diet.  For instance, parents have reported an increased desire to interact, more curiosity and interest, more eye contact, increased play skills, and reduction in self-injurious behaviors.  Moreover, parents have also reported a subsequent reemergence of self-injurious behaviors following the re-introduction of gluten in the diet.  Notably, the speed with which behavior deteriorates as a result of accidental gluten ingestion by children on a gluten-free diet has been described as dramatic and noticed by many parents (Compart and Laake, 2006).

While overall results are mixed, a small study (Knivsbert et al., 2002), compared for one year 10 autistic children who were placed on a gluten-free, casein-free diet to 10 autistic controls who were not placed on any restrictive diet.   Although there was some improvement in both groups, reportedly the improvement in the diet group was striking.  Specifically, “extreme anxiety… caused by the sound of the school bell, noises from a lawn mower, sleeping in a new bed, or entering a room with many people… [was] drastically reduced in the diet group, but not in the control group,” and the tendency for some children to “dislike and reject physical contact even from their parents… was no longer a problem in the diet group after the experimental period was over.” The researchers reported that no statistically significant changes occurred in the control group except in the development of linguistic skills (though these were not as marked as those in the diet group), but significant positive changes were registered in the diet group for peer relationships, anxiety, empathy, physical contact, verbal communications, eye contact, reaction when spoken to, language peculiarities, judgment of dangerous situations, number of interests, extremes of restlessness or passiveness, attention, social and emotional development, communicative development, cognitive development, sensory/motor development, non-verbal cognition, linguistic skills and motor competence.  A drawback of this study entails the small sample size, and the fact that the results have not been widely replicated in other studies.

The variability of success on the diet is possibly reflective of different biological mechanisms associated with different subsets of people with autism.  Autism is a heterogeneous disorder with multiple causes.  This principle of multiple determination exists across a vast array of phenomena in nature.  In other words, many pathways can end up at the same place (e.g., there are many routes to drive home from work, and there are many numbers that can be added together in different combinations to equal the number 10).   In this way, it is striking that one can draw any conclusions about such a heterogeneous population.  Or, as the saying goes, “To know one child with autism is to know one child with autism.”  Moreover, success with the diet can depend on a variety of factors, including child’s age, degree of autism, presence of other conditions (known as co-morbidity), co-existing additional food sensitivities, degree of health of the gastrointestinal system, amount of gluten previously in the diet, and degree of diet compliance.

Benefits of Eating Gluten-Free
With individuals with Celiac disease, avoiding gluten is imperative and is the only reliable “treatment” for the condition.  However, even if one does not have Celiac disease, despite the variables listed above, there are a number of reasons why it is worth trying a gluten-free diet.  It is low risk, insofar as gluten has little nutritional value.  In this way, avoiding gluten is better for everyone (regardless of presence or absence of gluten intolerance) insofar as we eat more protein, fruit, and vegetables when we do not eat gluten.  In addition, when gluten is avoided, many processed foods are also avoided.  (It is now well-established that eating processed foods contributes to a host of disease conditions—perhaps this is why individuals with fibromyalgia, rheumatoid arthritis, and many other medical problems often benefit from avoiding gluten in their diet.)  Moreover, the intervention is non-invasive, not overly expensive, and does not require a prescription.

Even though I do not have Celiac disease, I have noticed numerous benefits after eating gluten-free since 2008.  In addition to enjoying a substantial increase in sustained energy, I have not gotten the flu or a cold for four (4) years now.  The gastrointestinal disturbances that I had experienced for close to 20 years seemed to disappear.  A dietician on our Board of Directors reported to me that a total of nine (9) conditions completely went away after she began eating gluten-free.

How Eating Gluten-Free Can Enhance Our Relationship with Food and With Each Other
There are many other benefits from altering the way that we eat besides the obvious ones.  Our family has derived a substantial amount of pride and accomplishment at improving our son’s diet.  Liam has a boundless interest in healthy, good food, and his appetite for vegetables is insatiable.  We take deep pleasure in his immense enjoyment of food.  In addition, eating gluten-free has become a family affair, where we all devour our gluten-free pancakes together—not just because they are so delicious, but because we do not want him to feel excluded or different.

Paying attention to what we eat also helps us to be mindful of other important factors pertaining to food.  In addition to having radically altered the way our family eats since the diagnosis of our son, I have worked with many individuals with eating disorders and other eating concerns due to my background as a clinical psychologist.  Through both experiences, the following tenets of mindfulness in eating have proved useful in expanding our awareness of how we can continue to nourish our bodies and lives:

  • Use heavy cloth napkins folded nicely and in your favorite colors
  • Drink from your favorite glasses (e.g., heavy, clear glass that feels substantial and pleasurable when lifted)
  • Use a heavy plate in a color that you like
  • Chew every bite thoroughly so that you can experience the different stages of each taste
  • Avoid putting the next bite on your utensil until you have swallowed the previous bite—go slowly
  • Avoid having meals with people or places that make you feel uncomfortable
  • Unless you are visiting NYC and want to experience grabbing a “slice” in a New York minute, avoid eating while standing up or walking
  • Avoid eating while in your car (if purchasing food from a drive-through, wait until you reach your destination to eat it)
  • Turn off the television while eating
  • Whenever possible, eat at the dining room table
  • Make sure to eat a breakfast with plenty of protein (as eating protein in the morning helps to control weight, regulate mood, and sustain concentration across the day)
  • Eat together whenever possible.  Family meal times can help to instill a sense of “we” in each of us.  Not only can we work on learning table manners while eating together, we can also review the day that just occurred and preview for the next day.  Research reveals that the single variable of eating together as a family on a regular basis predicts a host of positive psychological attributes in children—regardless of socioeconomic status, level of education, or ethnicity (Berk, 1999).
  • Tips for Success with Persuading Little Ones (or Oneself) to Eat Gluten-Free
    Some readers may doubt that they can persuade their finicky eaters to eat gluten-free (or do not believe that they can go without gluten themselves).  Below are some tips that might work to boost your confidence:

  • If all family members do it together, no family member will feel left out and it will be a collective endeavor.
  • In order to see any potential gains from a gluten-free diet, it is important to try the diet for at least six (6) months as it takes time for the effects of gluten to leave the body.
  • While some families prefer to go “cold turkey” and to eradicate all gluten from their diet at the same time, other people approach the project by going meal by meal, where they learn how to make their breakfast gluten-free, and then their lunch, and so on.
  • Many parents are more successful starting off if they sneak the good foods into foods that the child prefers (e.g., spinach into freshly squeezed juice, or vegetables in a muffin or a meatball).  When we first started altering Liam’s diet, we pureed kale and put it into his pancakes!
  • Sometimes the child is more likely to try a food if he or she sees others enjoying that food.  As a result, you can really “ham it up” (pun is intended) with how delicious your nutritious food is while eating with your child.
  • Exploit the “proximity effect” by putting a less desired (but healthy) food next to a preferred food on your child’s plate (even if the less desired food is initially in the form of a sauce that your child can dip his or her preferred food into).