Many medical professionals deny the effectiveness of removing gluten and casein from the diet. Mostly, because there are no large, double blind, peer-reviewed studies. These physicians and dieticians also try to discourage parents by telling them the dietary restrictions are impossible to implement correctly. Parents of autistic children who actually use the gluten-free casein-free diet (GFCF), however, testify of its beneficial effects.
What is Gluten and Casein?
Gluten is a group of proteins in wheat, barley, and rye not found in ancient grain varieties. These proteins are relatively new to the human body and resulted from natural cross breeding practices. Gluten is not a genetically modified molecule; it did not come from a laboratory. Its presence in wheat and rye flour gives bread a strong structure, elasticity, and the ability to trap air bubbles as it rises. This results in sturdy, yet soft, bread that holds its shape. Gluten allows bakers to create sandwich-type loaves rather than flatter and denser breads.
Casein is one of the proteins found in dairy products like milk. Its presence in cheese allows it to melt. While a casein-free diet eliminates all forms of casein, there are other troublesome proteins also found in milk. For that reason, some individuals do better on a gluten-free dairy-free diet. Going casein or dairy free is not the same thing as avoiding lactose. Lactose intolerance is an inability to digest milk sugar, while casein or dairy intolerance comes from a reaction to milk proteins. Occasionally, the bovine protein in milk can cause a reaction to the same protein molecule found in beef.
How Gluten and Casein Contribute to Autism
Without specific scientific studies to draw upon, the connection between gluten, casein, and autism is mostly theory. Dr. Kalle Reichelt originally discovered and reported the first possible link in the 1980s. Upon analyzing the urine of autistic children, he found abnormally high levels of casomorphine (from casein) and gliadomorphine (from gluten) peptides.
When enzymes break down protein during digestion, the first step in that process creates opioid peptides. These peptides are further broken down into individual amino acids. Large amounts of peptides in the urine signaled incomplete digestion, but normally, peptides are too large to pass through the intestinal wall and into the bloodstream. Reichelt theorized that while opioids naturally occur in the central nervous system, the levels he found in the urine were too high for them to have originated in the brain. They had to be coming from dietary sources such as wheat and dairy.
The fact that the urine contained gliadomorphine and casomorphine peptides also suggested that these autistic children suffered from a syndrome known as leaky gut. Leaky gut occurs when the tight junctions of the intestinal wall loosen and allow partially digested food particles to leak into the bloodstream. This can cause various allergies and food intolerances since the immune system often doesn’t recognize the food particles and switches into attack or defense mode.
Despite the high level of peptides in the urine, Reichelt also wondered if some of the opioids were bypassing the kidneys and making their way through the blood brain barrier. Were this to be the case, they could possibly bind themselves to opiate receptors in the brain, blocking pleasure centers and other neurotransmitters. These peptides would then mimic other opiates such as morphine and interfere with normal brain functions.
Another possibility is the non-IgE mediated food allergy theory. This idea is more recent. For many years, allergists have only accepted IgE immune responses as being a true allergy, but research done by Dr. Harami Jyonouchi found very few autistic children test positive for IgE mediated food allergies. When he tested these same children for pro-inflammatory cytokine responses to gluten, casein, and soy, a significant proportion of the children tested positive. Food sensitivities and intolerances create intestinal inflammation that can lead to leaky gut syndrome.
A recent study focusing on celiac disease and gluten sensitivity has also shed light on possible connections between gluten and autism. That study clearly establishes gluten sensitivity as a separate entity from celiac disease. However, researchers also found that of the individuals studied, leaky gut syndrome existed only in those with celiac disease. Those with gluten sensitivity did not have leaky gut. While one of the leading celiac researchers believes a significant portion of autistic children have celiac disease or gluten sensitivity, a scientific connection between gluten, casein, and autism is still missing.
Benefits of a GFCF Diet
Despite the lack of scientific and medical backing, a GFCF diet for autism has been popular since Reichelt’s discovery. Some parents insist that testing for peptides and other food intolerances is essential to know if an autistic child needs to go gluten and casein free. While pretesting is useful for some children, a negative result does not mean the child is not sensitive to gluten or casein.
Many celiac experts believe that gluten does extensive damage to the body outside of the digestive system. In fact, there are over 300 different conditions associated with gluten intolerance (including neurological disorders) that won’t show up on allergy tests. For that reason, many parents of autistic children choose to use elimination diet methods instead.
An elimination diet consists of pulling all forms of the suspected food from the diet for several weeks, then reintroducing it to compare the differences. The food’s reintroduction will cause a symptomatic over-reaction if the child is intolerant. For many children, the changes this autism diet makes are so significant parents never reintroduce casein or gluten. Some of the improvements reported by parents include the following:
- relieves gastrointestinal inflammation and distress
- decreases hyperactivity and improves attention span
- improves speech ability and communication skills
- reduces behavioral issues
- improves sleep habits
- corrects bowel irregularities
- eliminates tantrums and meltdowns
- greater ability to handle change and stress
- clears brain fog; improves ability to follow directions
- reduces food cravings; more willing to try new foods
- sensory issues and dysfunctions improve
Like other autism therapies, a gluten-free casein-free diet won’t result in a complete recovery by itself unless the child has celiac disease. Even then, depending on the age of the child, pre-existing neurological damage can be permanent.
How to Implement a Gluten-Free Casein-Free Diet
Despite the difficulties, implementing a GFCF diet can be simple. While many processed foods do contain gluten or casein, milk and wheat are two of the eight major allergens. The label will clearly indicate their presence. Manufacturers rarely add rye to processed foods, so the hardest part is learning how to spot barley. Luckily, there are major brands that do not hide gluten beneath generic terms like natural flavors. It’s easier to stick to using those brands.
Initially, it will take time to learn which foods, brands, and ingredients are safe to use. Unless the child has celiac disease and needs to go gluten free immediately, many parents of autistic children implement a GFCF diet more slowly. The popular method is to go casein free first. Replace the child’s milk with a gluten-free brand of almond, coconut, or rice milk, switch to a casein-free margarine, and skip the cheese for a while until label reading gets easier. Most dairy free cheeses still contain casein to help them melt. Once the child has adjusted to being casein free, parents can slowly remove gluten from the diet.
With many gluten-free casein-free recipes available online or in cookbooks, GFCF products, and online celiac disease groups, implementing a gluten-free diet is not as difficult as most people think. Just stick to the basics. Use plenty of meats, eggs, healthy fats, potatoes, rice, fruits, and vegetables. These basic whole foods are inherently gluten free. As time goes on, parents can learn how to adapt the family’s favorite dishes, bake with gluten-free flours and starches, and discover which processed foods are safe – to bring more balance and variety to meals and snacks.