If your GP, dietitian or nutritionist isn't yet aware of the diet, don't be discouraged as just the sheer amount of moving stories, conference presentations from professionals in the know and literary examples from both parents and children is more than enough to warrant giving diets like the GF/CF Diet or SCDtm Diet a chance.
Mono-sodium Glutamate - a flavour enhancing chemical
Collectively the avoidance of these four things is often just referred to as the
Whilst this is essentially the basis of the diet and is sufficient for the majority, it should be added that some (often the more severely autistic) may benefit further from the elimination of additional things such as certain fruits, products containing yeast and sugar, nitrates, high salicylates and phenols etc. More information about the 'Advanced' Diet can be found in the book 'Diet Intervention & Autism' (see details below). As the author herself mentioned once however, "There is no such thing as a safe food for this diet (although there are good bets at safer foods!), as all children will vary in their intolerances & their individual threshold levels. What is safe in one portion a day, may well be toxic at 2 portions a day". Questions and answers about other ingredients in addition to the four main ones listed above can also be found and discussed on the Autism Medical website
It is not possible to explain it all here and a more detailed description is available from other sources (see below). However as a very brief introduction to it, this extract is printed with the kind permission of Marilyn Le Breton, author of 'Diet Intervention and Autism'
"When you eat, the food you consume is broken down in your stomach. The bits that are not used by the body are flushed out as waste matter. In autistic people, the breakdown of two proteins present in some foods, gluten and casein, is not completed properly.
The resulting fragments of these proteins are called peptides. Peptides are small enough to pass through the wall of the gut, rather than being processed in the normal way.
The autistic individuals who are producing these peptides are likely to have gut walls that are damaged and therefore these peptides find it even easier to pass through them. These peptides get into the bloodstream and the central nervous system. As the peptides journey around the body, they make a pit stop at the brain, where they do untold damage before continuing their journey and finally making their way out of the body, via urine. Both the gluten and casein peptides (gluteomorphine and caseomorphine) are very similar to morphine, a highly addictive drug."
The author then discusses how this can affect an individual's behaviour by using the illustration of her son Jack.
Jack is a 'drug' addict. His body is unable to break down certain foods. . . . Instead, his body converts them into morphine-like substances, which float around his body and brain, causing havoc.
Two-thirds of the time, Jack was as 'high as a kite', which accounted for his lack of eye contact, being in a world of his own, the sensory problems with his sight, his self-stimulation, his bizarre behaviours, his incredibly high pain threshold and his total lack of any sense of danger. . . . The screaming fits that he would have both day and night, when he would attack himself and me, occurred when the poor mite was having the withdrawal symptoms from his drug. He was in pain and totally out of control. Which is why I had found that the easiest way to calm him down was to give him a glass of milk and a couple of biscuits or a bread roll. He had then had his drug 'fix' and he'd 'tune' out again and display all of his classic autistic tendencies. Jack's whole life revolved around being 'high' and going through withdrawal, several times a day"
These are just very brief extracts of a book that is invaluable for anybody thinking of beginning the diet or wanting to find out more. It's a wonderful starting point and source of reference and we would really urge parents to purchase it if at all possible (see details of where to obtain it below
Candida - As many people on the Autistic Spectrum are also affected by Candida (many more than other groups), it warrants a brief mention on this page as it can have a dramatic effect on a child's development. It is something worth investigating and treating at a later stage, perhaps when the body has had a chance to settle down from the changes brought about by the removal of Gluten and Casein.
Put simply, Candida problems are the result of yeast overgrowth in the body and those on the Autistic Spectrum seem to have a particularly high incidence of it. The classic symptoms aren't always obvious in Autistic children, although there are some common signs such as a child pulling at their behind and private parts and craving sugar. It can also sometimes be seen in a child's mouth or as nappy rash or thrush.
As Autistic children don't necessarily show common symptoms and the current level of NHS testing for Candida doesn't always pick it up, it is worth going to a specialist or a GP who is knowledgeable about Autism and Candida or has experience in this area. Unfortunately we can't give out the names and contact details about individual doctors here, but if you would like more information on treating Candida please visit the Autism Medical website or call their helpline.
Autism Medical (Formerly AiA) The place to start. The website Autism Medical is a wonderful source of help, information, parental experiences, research and scientific facts. It will tell you clearly and simply what the diet involves, why it is necessary and what to expect. Alternatively call 01252 370 257 between 10am-2pm during school term time.
Lock's Sausages Lock's manufacture a range of high quality hand-made sausages specially developed for Autistic children. All their products contain no gluten, milk, eggs or additives and are made with fresh British meat, ideal for home freezing. Home delivery UK-wide. Visit Lock's Sausage or call 01623 822200
"Diet Intervention & Autism" If you only pick up one book this year, let it be this one as whatever stage of the diet you may be at, this is essential and fascinating reading. It's a practical guide full of invaluable and easy to understand advice as well as recipes, a basic food guide, glossary and further useful contacts. Purchase from Amazon.co.uk (Author: Marilyn Le Breton. Publishers: Jessica Kingsley Publishers)
"A User's Guide to the GF/CF Diet for Autism, Aspergers Syndrome and AD/HD" This book (also available from Barbara's Kitchen) is written by a 12 year old boy on the Spectrum. It tells of everything you need to know, both good and bad, about the diet from a child's point of view. Luke offers encouragement and practical advice on what to expect when beginning the diet, how to alleviate any initial discomfort and how to live with the diet. (See snippets below) (Author: Luke Jackson)
"AiA Gluten & Dairy Free Cookbook" Literally hundreds of recipes that have been developed for those on the Spectrum. Cooking is a piece of cake (excuse the pun) with this book in the kitchen
Autism Research Unit - Sunderland University The research side of the Unit falls into 2 main sections:
Analysis of the urine of people with autism in order to seek chemical entities which could provide insight into any underlying metabolic abnormality
The use of gluten free diets for the alleviation of some of the symptoms of autism
The Unit produces a booklet which gives a full rundown of its current research and a helpful guide for parents / clinicians who are thinking of implementing a gluten and/or casein free diet. All interested parties should contact the Unit at The Autism Research Unit, History & Current Research School of Sciences Health, University of Sunderland, Sunderland SR2 7EE, Tel: +44(0)191 510 8922
Autism Research Unit
National Autistic Society The site includes information about Autism and Asperger syndrome, and about the support and services available in the UK for:
People with an autistic spectrum disorder (autism or Asperger syndrome)
Visit the website
Paains Live Autism Newswire A place to read autism related news and
research from around the world direct from the site. This is a free service with no subscription or registration fee. Updated every few minutes. Visit the website
Yahoo Group for Autistics Only A place to chat set up by an Autistic person for other people on the Spectrum. To URL to subscribe is Hephautosemail@example.com
Dietary Needs Direct . . . We are here to help in any way we can. Thanks to the wonderful support from AiA in the past, we can continue to increase our range of diet-sensitive products and respond to feedback from parents already following the GF/CF diet
Feedback Just a few snippets from the Autism Medical Forum (now a closed forum) thread "BOASTING, CROWING & CHUFFED TO BITS!" taken with thanks. To see the full thread, please click here and then select Forum, General Questions and then find the thread with this title
"Its just wonderful to watch our little ones come out of the fog"
"About 4 months ago, I was almost ready to give up on everything . . . but by taking things slowly and following a 'diet challenge' suggested by Marilyn, we have seen such improvements"
"The difference the diet has made is unbelievable. We are so looking forward to our future after being so devastated when he was diagnosed"
"Tonight putting him to bed he said "night mummy" it is the first time I have hear him say my name"
I am so proud of him and everyone elses children for the achievements t"
hat they are making, however big or small (most would seem small to non ASD children's parents, but they are like climbing mountains to us)"
"I think for the first time his sister, able to go on a family trip during the hols, just like her friends had an idea of what it was like to be a 'normal' family."
"The change after switching from milk to soya was amazing! I wish we had done it sooner"
"The special needs helper says what a change if we can keep this up he will sail through school"
"Thanks to everyone for all the support given by AiA, none of this would have happened without the diet!"
"Anyone who does not believe the power of this diet should read this thread.It shows how well our kids do"
"Unlike previous times pre diet when we would have had major wobbles both at home and school, we sailed through"
"My son has just had his school report brilliant excellent wonderful I feel so proud. The change over the last few months since starting this diet has being mentioned more than once"
"When I first stumbled across the AiA site a month ago, I didn't think gluten was a problem . . . Boy was I wrong!"
"10 weeks ago we were told by out paediatrician that our little girl would never speak to us. She has been on the diet now for 8 weeks and this morning she sang . . . I can't thank AIA and all those involved enough for giving me my little girl back again"
"We have been doing the diet a year next month and have still got some way to go, but what a difference in a year"
Extracts from the book "A User Guide to the GF / CF Diet for Autism, Asperger Syndrome and AD/HD" written by Luke Jackson who is 12 years old. Please obtain a copy from Barbara's Kitchen on 01443 229304
"I have compared this diet with a boat journey - a bit rough, a few accidents, but it is worth it because you end up at a much better place"
"Before the diet, I had huge black rings around my eyes going right down to the tip of my nose"
"I used to have stomach pains and diarrhoea all the time . . . Ben had the opposite problem to us. He has always been constipated"
"For some people the diet has been miraculous; for others it has helped or changed them gradually. Whichever way, it needs to be done one hundred per cent; there are no half measures"
Glossary of further topics that you may come across or wish to find out more about - Biotin is a vitamin related to the Bs and is normally produced by friendly bacteria in the digestive tract. Replenishing these flora should ensure enough biotin, but it can also be taken as a supplement Biotin
- Calcium is important for the regulation of impulses in the nervous system and for neurotransmitter production. However, excessive levels of calcium (hypercalcinuria) can result in stupor and have been reported to occur naturally in some autistic people (Pervasive Developmental Disorders: Finding a Diagnosis and Getting Help by Mitzi Waltz, copyright 1999 by O'Reilly & Associates, Inc) Calcium
- Caprylic acid is a fatty acid said to be active against yeast in the digestive tract Caprylic Acid
- "People with autoimmune diseases that involve the nervous system say EFAs are very helpful in reducing symptoms, and there is some research to back them up. EFAs appear to help the GI tract resist and repair damage…. Efamol and Efalex are brand-name EFA supplements made by Efamol Neutriceuticals, Inc. Efalex was specifically created to treat developmental dyspraxia in the UK and is widely touted as a supplement for people with ADD or ADHD as well. Efalex contains a mix of omega-3 fish oil, omega-6 EPO and thyme oil, and vitamin E. Efamol, marketed as a treatment for PMS, combines EPO; vitamins B6, C, and E; niacin zinc and magnesium. . . . It's great if you can get your EFAs in food. (information from Pervasive Developmental Disorders: Finding a Diagnosis and Getting Help by Mitzi Waltz, copyright 1999 by O'Reilly & Associates, Inc).
Essential Fatty Acids
- Garlic is said to be active against yeast in the digestive tract Garlic
- Phenols are chemicals found in foods that some people have problems processing and end up with symptoms including dark circles under the eyes, red face/ears, diarrhea, hyperactivity, aggression, headache, head banging or other self-injury, inappropriate laughter, difficulty falling asleep at night, and night waking for several hours. The condition is called PST deficiency (see below). Foods like tomatoes, bananas, red grapes, milk, peanuts and food dyes contain higher phenol levels than other foods. Phenols (Also see Salicylates) Click here for more information on Phenols
-theory that some with autism are low on sulphate or an enzyme that uses this, called phenol-sulphotransferase-P. This means that they will be unable to get rid of amines and phenolic compounds once they no longer have any use for them. These then stay in their body and may cause adverse effects, even in the brain. Treatment is dietary as well as Epsom salts baths.
Phenolsulphertransferase (PST) deficiency
- Probiotics are intended to counteract the harmful affects of antibiotics. As most people who have taken a course of penicillin know, these valuable medications can cause digestive distress even as they heal infection. Probiotics are substances that attempt to restore the friendly intestinal cultures that help us digest our food. Among other things, these cultures (and other probiotics) keep the growth of Candida albicans yeast in balance. Commercial probiotic supplements may combine a number of substances, sometimes including digestive enzymes as well as helpful bacteria, garlic, and the like Probiotics
- Salicylates are a type of Phenol. Phenols are chemicals which all living things and foods contain. Food containing high phenol levels uses up more than the usual amounts of the 'free sulphate' which is held in the gut. In Autistic people, the level of 'free sulphate' in the body is already much lower than in others so eating foods with a high phenolic content leaves even less available for other digestive requirements and for lining the gut walls. There is simply not enough 'free sulphate' available. Not all foods with a high phenol level also are high in salicylates as not all phenols are salicylates. Foods with a high salicylate level typically contain tomatoes, dried fruits, berry fruits, tea, olives, grapes, almonds, liquorice, peppermint, honey, Worcester sauce, citrus fruits, berries and currants, with pears being one of the more 'safe' options. Foods full of phenols but not salicylates include banana and chocolate. Whether a low salicylate and/or a low phenol diet is followed, is often a case of trial and error to see which products produce a troublesome reaction. (Also see Phenols)
"The role of sulphation may well be one of the pivotal factors in the causation of autism yet it is poorly understood and has received scant attention. The role of sulphate in the immune system, in the effectiveness of hormones and in maintaining the integrity of intestinal function, kidney function and detoxification systems is deserving of much greater attention than it currently receives. Owens (1998) has drawn the attention to the importance of sulphation issues in chemical bodies called GAGs (Glucosyl Acetyl Glucosamines) which have huge implications for many functions including brain development. Processes involving inflammation, such as that which would result from infections that may be acquired naturally or from introduction through vaccine programmes, will result in stripping of the sulphate containing GAGs from the intestinal wall. Owens has suggested that these GAGs will form the main reservoir of sulphates held in the body. Therefore, any lingering inflammatory process will result in sulphate depletion. Waring (2000b) has also presented data indicating that the conversion of sulphite to sulphate is severely inhibited after immunisation of adult students against hepatitis B. Sulphate ions are only poorly absorbed from foodstuffs but may well be absorbed through the skin. That is the rationale for the use of a cupful of Epsom Salts (Magnesium Sulphate) in the bathwater of children with autism" (Taken from The Sunderland Protocol - a paper presented at the Durham Conference 2000. To see the full paper, Sulphation Click Here