Gluten Free Diet can help with asperger’s syndrome

One of our customers, Carol Gray, relates her experience of changing the diet of her son who has been diagnosed with Asperger’s syndrome to avoid gluten.

Carol relates her tale:

We have seen that diet can make a very big difference. Cutting out gluten (strictly) with our son (diagnosed with Asperger’s Syndrome) stopped the horrible extremes of his then behaviour – the tempers, anger, tantrums, accidents, suicidal and depressed actions, etc. They were gone within ONE WEEK. The house became calm and peaceful. He played happily with his sister. This continues to this day. He still has his smaller Asperger’s difficulties – but none of the above which made life awful for all of us.

Our Story

Our family have discovered, quite by accident, that certain foods can have a enormous, and extremely detrimental effect on your health and well-being, if your body is not able to deal with those foods.

We are a normal family – except that one of the family, John, has an inflammatory medical condition and our daughter, Amy, has a different medical condition. However, it is really concerning our son, Tom, now diagnosed with Asperger’s Syndrome (on the autistic spectrum), that I am writing this for.

Early signs

In early 2006, Tom started to show very alarming and distressing behaviour at home. He was 7 years old. His unrest and distress got very bad, he would move his hands and feet constantlyand also frequent incidents of aggression with his sister were the start of it. Then came hot tempers, anger and aggression that would rise from nothing (at least nothing to the rest of us). He also wrote suicidal and similar notes. I started to fear for our daughter and the negative effect all this was having on her. And for Tom who had always before now been an extremely good boy, always very well behaved outside his tempers which were getting worse now.

We were desperate. We had to try to get some help to sort out what was wrong – I really do not know where we would be now if things had remained as they were then. In early 2007 Tom was diagnosed as having Asperger’s Syndrome, which is on the autistic spectrum.

The previous year another member of the family, John, had started a starch free diet. By avoiding starch John found that an inflammatory condition he had was relieved and he was pain free. So I was home-cooking starch-free food for John, and cooking normal food for the rest of us. It was a lot of work for me!

Then I saw the front cover of one of the National Autistic Society (NAS) magazines, entitled ‘Inflammation of the Brain’. I thought, why not try the starch-free diet for all the family? It would be so much easier for me cooking and baking the same food for everyone in the family. In addition, the starch free ‘diet’ was a very healthy diet, Although we were eating very healthily anyway, John, on his starch-free diet, was eating even healthier than we were – so it would certainly be a change for the better on that front too.

So, in early 2007, I started to give the whole family food that was completely (and strictly) starch free. And what a difference it made -

Within a week, we suddenly realised how calm and quiet the house was – there were no tempers or tantrums from Tom – and next to no arguments with his sister. The week had been beautifully calm and peaceful. Things seemed to be normal again! It was amazing – absolutely staggering and almost unbelievable.

After some months, I think, of continuing with the starch free diet (which Tom was not very keen on), we gradually realised that it was probably the gluten that was the problem – avoiding starch had avoided gluten automatically, since food with gluten invariably also has starch in it – so we changed our Tom’s diet to be gluten free.The new-found peaceful life continued – and continues still today, albeit still with its little ‘ups and downs’, as you’ll read below.

It is almost miraculous. It seems amazing to me that what we eat can have such a detrimental effect on our bodies and character. It is probably not surprising that people find it difficult to believe that diet can make such a difference – but I am writing to tell you that it is NOT a whole load of rubbish, as some will say. It is TRUE – at least for some, maybe many, people.

Maybe if medical bodies researched it, listened to and believed people who have found it to make such a difference as we have, and openly and actively encouraged others to try it – instead of remaining sceptical and silent about it and, when things get bad, pushing medication or just saying, “There’s no cure” – maybe then we’d be less astonished by the concept of some people reacting badly to certain food items.

Today Tom continues to be calm. He is relaxed and his extreme tempers and tantrums have gone. He no longer says or wtrites the awful suicidal and self depricating things. His need to keep moving has gone, all those incidents he had with his sister have gone. He is happy and content. TOTALLY DIFFERENT to how he was before. He still has Aspergers Syndrome and still has some of the little difficulties that go with it – but they are tiny compared to what he had before, and they can be helped and handled – they are nothing at all compared to what he (and we) had before. He is still lively – that is his personality – but is calm and relaxed too.

Every now and again, however, there are times when the old ‘symptoms’ start returning – sometimes they start so gradually that we don’t realise until the house gets much more what it used to be like – and then we have to think what Tom has eaten that is out of the usual. One time it was the shop-bought “Gluten Free Organic Cereal”, another time it was the shop-bought Organic Mixed Nuts, another time it was other shop-bought sweet things we were given that were supposed to be gluten-free. The latest incident is the pills he was taking, when he became, over a few weeks, gradually very much more ‘hyper’ in everything he did, which ended up being too much for everyone in the house. We stopped the pills – and within 24 hours Tom was again much his real self and after 3 days his ‘symptoms’ had more or less completely disappeared.

Whether he is reacting to some unlabelled gluten, or gluten contamination or maybe something else in the products above who knows – but, if there is a reaction – Take away the food that he is reacting to, and he becomes, once more, his real self.

So – we have to remain vigilant.

There is no comparison to life before “No gluten” – the change in him is real. No way has it been imagined or exaggerated. The intolerance effect has been so clearly demonstrated time and time again that it can in no way be justifiably challenged by anyone saying it is just a coincidence, as some will, no doubt, try.

I just wish more people were made aware of the effect certain food items such as gluten, casein (a protein in milk) and starch, amongst others, can have on people.

So many families are in the depths of despair with their child’s behaviour – and the child must be in even more deep despair – it is scandalous that families and children can go close to breaking point, yet they are still not told of the possibility that a food intolerance may be part, or the main cause, of a child’s poor behaviour.

————————

John’s Story

In 2006 John talked to a medical scientist who had researched into the inflammatory medical condition that John has.

The scientist told John that starch was the cause of his problem. The bacteria fed on the starch in the stomach, which then caused the inflammation which caused the pain.

So, after having over 20 years of pain and years of being on and off pills with their side-effects, etc., John decided there was no harm giving it a go, to see if eating no starch made a difference.

John began his starch free diet in June 2006. It was not difficult to do as I make most of the meals from scratch anyway. (A lot of processed food has added starch). It was almost unbelievable. After only 2 days John was free of his pain, the pain he’d had continually for at least 20 years and he could now move around so much more easily too. No medication was involved – the only thing that John had changed was to avoid all starch (strictly) in the food that he ate. That’s what, unquestionably, caused this unbelievable change in him.

No one ever told him

Despite having been regularly seen by specialists for over 20 years, no-one had ever told John of the piece of research detailing the effect of starch on this medical condition which meant he had continual pain and stiffness. No-one had told him that maybe the condition could possibly be slowed down or even halted just by avoiding eating starch. And no one had ever told us that Tom Asperger’s syndrome could be helped by avoiding gluten and casein.

34 Responses to Gluten Free Diet can help with asperger’s syndrome

  1. That is some pretty extreme behavior. I have a friend that had realized the effects of Gluten on his skin and hair. He got this skin rash and hair loss. It is a different perspective when it comes to depression and aggressive behavior.

  2. I am so pleased for you. The trouble is worth it. And so is the problem of “eating out” – but the better the restaurant, the less of a problem (except cost !!!) It’s the cheap and cheerful snack bars which are the stumbling-block.

    4 /5 years ago my osteopath (who is also a naturopath) recommended me to go on an exclusion diet. He took me off wheat, dairy, & ALL PRESERVATIVES. Absolutely NO “E” numbers [Permitted Additives ? Pemitted by whom for whom?] He became positively incandescent when aspartimenes were mentioned. Having seen what the benefits were, he tested me on small quantities of various foodstuffs: I held a morsel in my mouth until I could taste it, then he tested my reflexes. It sounds bizarre but it produced a list of foods – eggs, mushrooms, some nuts &c – to avoid. I was not really surprised. I had known for ever that I was dangerously allergic to shell fish so this was in a way an extension of it.

    To cut a long story short: In about six months I had gone down a size & a half in dresses, I no longer needed to wear support tights, the last packet of germaloids went in the bin as past their use-by date, but best of all, I was no longer subject to the sort of flatulence that wakes you up at 3am terrified you are having a heart attack – previously a regular occurrence several times a week. All fairly trivial but I am feeling five years younger and most of my recent acquaintances cannot believe I am almost 70. I had also once been subject to inexplicable bouts of irrational foul temper + bad language (believe me, I have a vocabulary). I now know these are cause by too much sugar. I now only use miniscule amounts of fructose and I am a far more serene person. My worst fear is that I will develop some medical condition that will require conventional medicine and I dread what my reaction may be – not to the pure drug – but to the additives and the supposedly inert substances used to make the pill or the medicine. (I won’t descibe the effects of my last flu injection …) Normally I see a homeopathic practitioner for minor ills.

    Of course we are what we eat – physically anyway. Where else do the building blocks for the seven year turnover come from ? The agro-chem, fastfood businesses have a lot to answer for. Why should a chemical that KILLS weeds or bacteria NOT do damage to another living orgainsm – me! Free-range, organic, you bet !

    Keep with it and keep experimenting. The dangerous substances will show up fast enough. And Good Luck.

  3. I am so pleased for you. The trouble is worth it. And so is the problem of “eating out” – but the better the restaurant, the less of a problem (except cost !!!) It’s the cheap and cheerful snack bars which are the stumbling-block.

    4 /5 years ago my osteopath (who is also a naturopath) recommended me to go on an exclusion diet. He took me off wheat, dairy, & ALL PRESERVATIVES. Absolutely NO “E” numbers [Permitted Additives ? Pemitted by whom for whom?] He became positively incandescent when aspartimenes were mentioned. Having seen what the benefits were, he tested me on small quantities of various foodstuffs: I held a morsel in my mouth until I could taste it, then he tested my reflexes. It sounds bizarre but it produced a list of foods – eggs, mushrooms, some nuts &c – to avoid. I was not really surprised. I had known for ever that I was dangerously allergic to shell fish so this was in a way an extension of it.

    To cut a long story short: In about six months I had gone down a size & a half in dresses, I no longer needed to wear support tights, the last packet of germaloids went in the bin as past their use-by date, but best of all, I was no longer subject to the sort of flatulence that wakes you up at 3am terrified you are having a heart attack – previously a regular occurrence several times a week. All fairly trivial but I am feeling five years younger and most of my recent acquaintances cannot believe I am almost 70. I had also once been subject to inexplicable bouts of irrational foul temper + bad language (believe me, I have a vocabulary). I now know these are cause by too much sugar. I now only use miniscule amounts of fructose and I am a far more serene person. My worst fear is that I will develop some medical condition that will require conventional medicine and I dread what my reaction may be – not to the pure drug – but to the additives and the supposedly inert substances used to make the pill or the medicine. (I won’t descibe the effects of my last flu injection …) Normally I see a homeopathic practitioner for minor ills.

    Of course we are what we eat – physically anyway. Where else do the building blocks for the seven year turnover come from ? The agro-chem, fastfood businesses have a lot to answer for. Why should a chemical that KILLS weeds or bacteria NOT do damage to another living orgainsm – me! Free-range, organic, you bet !

    Keep with it and keep experimenting. The dangerous substances will show up fast enough. And Good Luck.

  4. Good article. Interesting and useful. Improves understanding.

    M. Pradeep
    http://www.health-fitness-wellness.com

  5. Great blog, reading it through RSS feed as well

  6. Great blog, reading it through RSS feed as well

  7. Is gluten free the same as starch free? My son has AS, also an inflammation disorder.
    I am reading that a starch free diet can help. But I don’t know yet how to make him starch free breads, cookies, and cakes.
    Please help.

    • No. I’m afraid gluten free isn’t the same as starch free. Gluten is to do with the proteins found in certain grains whereas you can get starch from potatoes and rice which contain no gluten.

      You may find this starch free leaflet helpful. http://www.windowonwoking.org.uk/sites/nass/Starch_Free_Diet.pdf

      There is also some speculation that sprouted grains contain less starch but I haven’t found a satisfactory authority on the matter yet. Let us know how it goes.

  8. Linda Carpenter

    Carol, your story sounds so familiar !! I was told to put my son on a gluten free diet as he suffered with dioreah and cramps from an early age. (he also had behavior problems and social issues) Within a couple of days the cramps disapperared, he was a happier child, he apperared healthier, he started putting on weight. Later he was tested for celiac disease and results came back negative.
    2 years later he was diagnosed with Aspergers syndrome. I had read somewhere that a gluten Casin (dairy) free diet had been know to have helped children on the autistic spectrum, so I gave it a go. The results, as with gluten free, were amazing!! The anger stopped, I was no longer being called to collect my child from school because he was gunning for someone who had done him an injustice! repeating himself had stopped, the difference was enormous. My problem now is just to get someone in the medical profession to take it seriously!
    I have read that there is a urine test that can check for opiates that gluten and caesin produce that enter into the curculation and efectively poison the nervous system. Does anybody know anything about this test, or has anyone had this test done?

  9. Linda Carpenter

    Carol, your story sounds so familiar !! I was told to put my son on a gluten free diet as he suffered with dioreah and cramps from an early age. (he also had behavior problems and social issues) Within a couple of days the cramps disapperared, he was a happier child, he apperared healthier, he started putting on weight. Later he was tested for celiac disease and results came back negative.
    2 years later he was diagnosed with Aspergers syndrome. I had read somewhere that a gluten Casin (dairy) free diet had been know to have helped children on the autistic spectrum, so I gave it a go. The results, as with gluten free, were amazing!! The anger stopped, I was no longer being called to collect my child from school because he was gunning for someone who had done him an injustice! repeating himself had stopped, the difference was enormous. My problem now is just to get someone in the medical profession to take it seriously!
    I have read that there is a urine test that can check for opiates that gluten and caesin produce that enter into the curculation and efectively poison the nervous system. Does anybody know anything about this test, or has anyone had this test done?

  10. Rob in Adelaide

    Hi,

    We have a daughter who exhibits extreme tantrums. I attended an Aspy event on Saturday where a parent said it helped greatly. We started the diet on Sunday.

    I am extremely hopefull (and desperate) that this will work. People just dont understand how this behaviour destroys people, marriage and families.. alcoholism, depression, arguments.. are all symptoms of the trauma we as parents go through.

  11. I am so excited, I have been reading alot on the net that digestive enzymes can help kids on the autistic spectrum.

    http://www.enzymeresearchgroup.net/docs/Enzymes%20and%20Autism.pdf

    I found a company called Houston Enzymes. The founder, Dr Houston claims that these enzymes are plant based and do no harm They will break down the gluten and casein that my son cannot tollerate.
    I took all the information that I could gather about them to my GP and said that I would like to try my son on them and he agreed that it is a great idea to try.
    We are a week into them and gradually building up the dose. I am already seeing incourageing results!! I am hoping that the enzymes will lead to us being able to reintroduce gluten and wheat back into my sons diet! (without all the behaviors).

  12. I am so excited, I have been reading alot on the net that digestive enzymes can help kids on the autistic spectrum.

    http://www.enzymeresearchgroup.net/docs/Enzymes%20and%20Autism.pdf

    I found a company called Houston Enzymes. The founder, Dr Houston claims that these enzymes are plant based and do no harm They will break down the gluten and casein that my son cannot tollerate.
    I took all the information that I could gather about them to my GP and said that I would like to try my son on them and he agreed that it is a great idea to try.
    We are a week into them and gradually building up the dose. I am already seeing incourageing results!! I am hoping that the enzymes will lead to us being able to reintroduce gluten and wheat back into my sons diet! (without all the behaviors).

  13. I just started reading your site – thanks for writing.

  14. Linda Carpenter

    My son now takes 3 AFP peptazide tablets with breakfast, lunch and 2-3 with dinner depending on how much protien is in what he is eating. The results are life changing for us!! We will never get rid of the asbergers but alot of the behaviors have gone. No more major tantrums! no more punching things! No more screaming “I hate you” No more refusal to do anything! he is a much happier young man, he is also finding socialising easier and I am actually looking forward to our family holiday now for the first time! He is now on a completely normal diet at last (with the emzines) and our lives have changed completely. They are not available on perscription as they are classed as a food suppliment and cost me just over £30 a month but in my opinion it is worth every penny! The results are amazing!!

  15. This article and the comments following it are very encouraging. Many of you have described my son in your before comments..I would love the same behaviour you experience with children after trying gluten/ casein free. Is changing over to a gluten free case-in free diet hard to implement and maintain?

  16. This article and the comments following it are very encouraging. Many of you have described my son in your before comments..I would love the same behaviour you experience with children after trying gluten/ casein free. Is changing over to a gluten free case-in free diet hard to implement and maintain?

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  20. hi my son is 6 and there has always been a feeling something was quite as my health vistor put it as he is quite the same as ie normal like the other children his . age we have just had a big change moving and changing school and we still had all his assements done becuase of the move i was wondering if there was anything i could do to help him calm down back into his routine and do as he is told he normally listens but he seem to ignore me now. if any body has any ideas please let me know. i have been told he has aspergers but just needs the assements to see what aspects he needs help with rache moore

  21. hi my son is 6 and there has always been a feeling something was quite as my health vistor put it as he is quite the same as ie normal like the other children his . age we have just had a big change moving and changing school and we still had all his assements done becuase of the move i was wondering if there was anything i could do to help him calm down back into his routine and do as he is told he normally listens but he seem to ignore me now. if any body has any ideas please let me know. i have been told he has aspergers but just needs the assements to see what aspects he needs help with rache moore

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  23. Just wanted to add my own experience. I was a volatile child and drove my parents crazy with unpredictable emotional outbursts and temper tantrums. Everyone walked on egg shells to avoid setting me off, and that continued into my adult life, though I had a better handle on it. Eight years ago, at the age of 32, I did an elimination diet. When I added wheat back in, I became violently angry within 15 minutes. After I tried this a few more times, I gave up gluten altogether. I have been on the diet for 8 years and for that entire time, I have been a calm, low key person. When I tell people who know me now what I used to be like, they are stunned. The diet has also nearly eliminated my stomach problems, but that is small in comparison to the emotional changes. I wouldn’t go back to eating gluten now for anything in the world. I like who I am now.

  24. Just wanted to add my own experience. I was a volatile child and drove my parents crazy with unpredictable emotional outbursts and temper tantrums. Everyone walked on egg shells to avoid setting me off, and that continued into my adult life, though I had a better handle on it. Eight years ago, at the age of 32, I did an elimination diet. When I added wheat back in, I became violently angry within 15 minutes. After I tried this a few more times, I gave up gluten altogether. I have been on the diet for 8 years and for that entire time, I have been a calm, low key person. When I tell people who know me now what I used to be like, they are stunned. The diet has also nearly eliminated my stomach problems, but that is small in comparison to the emotional changes. I wouldn’t go back to eating gluten now for anything in the world. I like who I am now.

  25. I really i’m the latest parent with some sort of child with autism My spouse and i enjoyed the way your described your calming techniques. My son only calms for me because I do similar thing with him, I have many silly voices and key terms that seem to work better than NO or other negative remarks.

  26. I really i’m the latest parent with some sort of child with autism My spouse and i enjoyed the way your described your calming techniques. My son only calms for me because I do similar thing with him, I have many silly voices and key terms that seem to work better than NO or other negative remarks.

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  28. Pingback: Aspergers Diet Tips | Aspergers Test Site

So, what is your take on this?