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The Gluten and Casein Free Diet and Autism

Updated on September 13, 2019
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Claire studied autism, childhood and psychology at The Open University and has 20 years experience caring for children with special needs.

Gluten is a common protein that can be difficult for some people to digest.
Gluten is a common protein that can be difficult for some people to digest. | Source

Food sensitivities and intolerances may result from poor digestion or absorption of specific foods. A person can be intolerant or sensitive to any food, although there are foods that more commonly cause issues. These include gluten, casein, nightshades and Salicylates.

Food intolerance symptoms and effects can vary from person to person but often include digestive, behavioural, breathing and skin issues. Many people believe that avoiding gluten and casein can be a beneficial to those who have autism. It is not known whether these dietary restrictions benefit autism directly or if it is a case that food intolerances and other related issues are more common alongside autism and therefore it is those on the spectrum who reap the greater benefits.

Casein is a protein found in dairy products.
Casein is a protein found in dairy products. | Source

The gluten and casein free diet, which is also known as the GFCF or GF/CF diet involves removing all sources of gluten and casein from the affected person’s diet. This can feel overwhelming or impossible at first especially when you consider that people with autism often already have restricted diets due to sensory issues and other needs. However once this has been successfully achieved many people have reported great changes and even that certain troubling or difficult behaviours have completely disappeared. One theory as to how these dietary changes are thought to work is that they eliminate or greatly reduce gastrointestinal problems and undiagnosed food allergies or sensitivities that are worsening or directly causing the behaviours rather than them being due to autism alone.

Food sensitivities and intolerances may result from poor digestion or absorption of specific foods. These reactions can be to one or two foods or a person may be sensitive to a wide range of foods such as milk, wheat, gluten, soy and eggs. Intolerances can also be caused by-products of abnormal digestion such as opiate peptides from milk and gluten. Unlike allergies where reactions tend to obvious and happen quickly after consumption, food intolerance reactions are often delayed so it may be hard to pin down and eliminate the problem food.

Symptoms can vary and include pretty much every area of the body. They may not be severe or particularly dangerous but are commonly uncomfortable, unpleasant and have the potential to effect everyday life, for example if you need to be nearby a toilet when out, cause breathing issues or cause you to feel very self-conscious due to skin issues or anxiety. It can be very difficult living with undiagnosed food intolerances which can lead into anxiety around food, restricted eating and low mood. To add the difficulties people often crave the foods they are in fact intolerant to.

Other symptoms of food intolerances may include:

  • Behavioural/psychological - decreased attention span, hyperactivity, impulsivity, mood swings, anxiety, panic attacks, withdrawal and obsessive behaviours

  • Neurological – headaches, ringing ears and dizziness

  • Skin – eczema, rashes, hives and dark circles around the eyes

  • Digestion – stomach aches, loose stools/diarrhoea, constipation and bloating. Some people alternate between constipation and diarrhoea.

  • Respiratory – excessive mucus, wheezing, worsening of existing asthma

  • Cardiovascular – changes in pulse rate and heart beat

Do you Follow a Gluten and Casein Free Diet?

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Specifically eliminating gluten and casein containing foods is believed to help due to the belief that many adults and children with autism spectrum disorders (ASD) are intolerant to or are highly sensitive to these proteins. It is thought that as a result of these sensitivities their bodies are unable to process either of these proteins in the same way as everyone else can. This then leads to the formation of peptides in their bodies because they are unable to be digested fully and pass through the digestive system correctly. In some cases these peptides can have an opiate like effect on the brain and it is this reaction that is thought to be the cause of a lot of the undesirable changes in the person’s behaviour and reactions to their environment. Many people also report that they crave foods that contain gluten and casein and if they do not eat them for some time they experience withdrawal like symptoms in the same way that a drug user may.

Some scientists do now agree that peptides can trigger unusual immune system responses in sensitive people. For example, research that was carried out at the New Jersey Medical School’s Autism Centre found that children who have autism were more likely to have abnormal immune responses to milk, soy and wheat than typically-developing children.

In normal digestion, the small intestine breaks down food into its smallest components, proteins are broken down into amino acids, fats into fatty acids and carbohydrates into simple sugars. These then pass through the intestine walls and into the bloodstream and travel around the body. For this system to function correctly it is vital that the intestines and particularly the intestinal walls are healthy. If the intestinal walls become damaged they can allow food to pass through before it has been properly digested. This is often referred to as 'leaky gut'. Proteins such as those found in milk, wheat and soy are often found to cause issues for people with damaged and compromised intestinal walls. If the body does not break down the proteins fully into amino acids it may struggle to use them within the body and can result in the production of peptides. Peptides are formed when two or more amino acids are joined or in the case of abnormal digestion, when proteins are not broken down fully and so molecules of amino acids remain joined together. If the lining of the intestines is damaged these peptides can travel through and into the bloodstream. Depending on how the amino acids are arranged in the peptides the body may or may not recognise them. If they are unrecognised the body considers them to be a foreign body and sends special cells to destroy them. If the body recognises a peptide it allows it to remain in the blood where it can travel around the body including into the brain. If the particular peptide is not normally present in the brain then a malfunction may occur causing a multitude of symptoms to be displayed.

For some people and particularly those with conditions such as ADHD or autism these peptides can have an opiate like effect within the brain. Opiates are drugs derived from the opium poppy such as morphine and codeine. Some research has shown that people with these types of conditions also are more likely to have problems concerning their intestinal lining or digestive system. These can include leaky gut and also having enough digestive enzymes to correctly digest foods. There may also be issues with the body not realising these enzymes at the correct times. Like morphine and other drugs people can become addicted to the opiate like effect produced by these foods and crave them. It is not unknown for people to limit their diet to these foods or those containing them due to the good feelings they cause when eaten. When these foods are not eaten for a time or are completely removed from the diet, the person may experience withdrawal type symptoms including irritability, rage and regressing behaviours.

Fortunately these withdrawal symptoms tend to be short lived but the full scale of improvement caused by removing the foods may not be seen straight away. This is due to the fact that it can take some time for all traces of gluten and casein to be expelled from the body. Casein tends to leave the body quite quickly and so results may be seen very soon after eliminating it whereas gluten can take longer, often several months or more. Results may be sudden or happen gradually over time.

The Proteins Gluten and Casein

Gluten is a protein that is found in grains such as wheat, barley and rye. Gluten can be very hard to avoid, although it is becoming increasingly common for shops and supermarkets to stock a range of gluten free foods such as breads, pastas, cakes, sweets, flours and crackers. Gluten can be a hidden ingredient in many unexpected products including crisps, sauces, processed foods, gravy and even children’s sweets, meaning that if you wish to exclude it from your diet it is very important to read packaged food labels carefully or opt for naturally gluten free foods such as fruits and vegetables.

Casein is a protein that is dairy products. Like with gluten it is often possible to buy foods that are dairy free and so will not contain casein. These include yoghurts, cream, cheeses, chocolate and alternative milks made using soya beans, oats, rice, hemp, coconut and nuts. Many supermarkets, health food shops and specialist retailers on and offline often stock a range of ‘Free From’ foods that do not contain gluten or dairy and so these are ideal for a gluten and casein free diet. These foods may also be free of other common allergens such as eggs and nuts. Any foods that are labelled as being suitable for vegans will also be safe to use as they must be completely free of all dairy products. These also will not contain eggs, however they may contain gluten.

Milk and its derivatives can also be found in many unexpected places such as sweets and pre-prepared food such as packet rice, sauces, soups and processed meats. Lactose free milk products still contain casein as these have had the lactose (milk sugar) removed rather than being entirely free of milk.

A gluten and casein free diet doesn't have to mean cooking is difficult.
A gluten and casein free diet doesn't have to mean cooking is difficult. | Source

Getting Started with the Gluten and Casein Free Diet

As with any diet that restricts what can be eaten, it is important to ensure that anyone following the GFCF diet gets adequate nutrition from the foods that they do eat. There are a variety of non-dairy sources of calcium such as kale, soya beans, broccoli and fortified non-dairy milks. These foods also have the advantage that the calcium they contain is more easily absorbed by the body. Vitamins and minerals, including calcium can be taken as supplements if needed or you are concerned about consuming appropriate amounts of these.

The gluten and casein free diet can be started in two ways; either you can completely eliminate all gluten and casein containing foods at once or you may prefer to take a slower approach and remove one protein at a time. The body is able to clear itself of casein quicker so many people chose to cut this out first and then remove gluten containing foods from their diets several weeks later. Because the body takes a while to remove all traces of gluten it may be several months before any real improvements are seen or felt. Advocates of the gluten and casein free diet recommend trialling the GFCF diet for at least six months for this reason.

Many foods such as fruits, vegetables, beans and pluses, eggs, rice and fresh and frozen meat are naturally gluten free. There are also many substitutes for commonly used items. Potato, rice, soya, coconut or nut flours can be used to bake cakes, breads and other foods such as pancakes and cookies. There is also a large range of milk substitutes available now and these include soya, rice, almond, hemp and coconut milks. Many retailers stock a range of specific gluten and milk free foods such as pastas, bread, cakes, yoghurts and cheese.

Specific casein and gluten free foods can be much more expensive than their counterparts and it may also seem overwhelming or hard work to bake your own cakes and biscuits or make things such as burgers or chicken nuggets but with planning it can be made just as easy as normal cooking. For example it can help to make a batch of many burgers at one time and freeze to use throughout the month. The same can be done with cakes, biscuits and breads. You do not have to spend hours each day preparing special meals. You could also chose to exclude these foods entirely and serve only fresh meat cuts. Many everyday family meals can be adapted by excluding or switching ingredients for gluten and casein free alternatives, for example using a non-dairy milk to make mashed potatoes or milkshakes. There may also be foods that you already use that are suitable for GF/CF diet without realising. This can help cut down considerably on the work and disruption involved in changing your diet.

Further Information

There are a vast range of books available that have information and recipes to suit a gluten and casein free diet. Online there is also a great selection of websites and blogs that make it possible to find a huge variety of information and recipes as well as the ability to connect with other people experiencing the same journey and difficulties.

As well as sites dedicated to the gluten and casein free diet specifically there are many more that are based around allergies or veganism (which will be free of all dairy products but may contain gluten ingredients) that can be used or adapted and are full of tips and recipes. Blogs and groups such as those found on Facebook or Yahoo can be a good source of information and recipes as well as support from other people going through the same challenges.

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

© 2019 Claire


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