Personal Experiences with the GFCF Diet

Apart from a few recent additions and improvements, most of the info on this page is a copy of a post I put on an autism forum in May 2007, trying to impress upon people the importance of doing the Gluten Free, Casein Free (GFCF) diet correctly to have the best chance of seeing any real results. Unfortunately far too many people think it’s too hard and don’t do it properly then give up thinking it doesn’t work. Obviously it’s not going to work for everybody, but it has to be trialled correctly to be given the best possible chance of an accurate and definitive outcome.

Autism is often accompanied by various food intolerances, particularly to gluten and casein, and also salicylates, amines and other naturally occurring food chemicals as well as preservatives and other artificial additives to food. Intolerance is NOT the same as allergy and cannot be tested for via blood tests or other allergy tests. It has to be determined via a carefully controlled and monitored elimination diet, followed by challenges of various types of food to ascertain whether or not the person is intolerant to that  particular food.

It is often clear from behavioural changes when beginning an elimination diet that something in the diet was causing problems – removal of the offending substance(s) can often  bring about a wonderful improvement in behaviour or physical symptoms but it can also cause withdrawal symptoms, making the person’s mood and/or behaviour temporarily worse, before an improvement is seen.  However, even if an improvement is seen on the elimination diet, the challenges must still be done to find out exactly which substance(s) the person is intolerant to so that many other foods are not needlessly avoided. Any changes in mood and behaviour or the manifestation of physical symptoms after re-introducing a particular substance into the diet can indicate an intolerance.

Contrary to what autism activist Jenny McCarthy might claim, the GFCF diet does NOT cure autism or Asperger’s Syndrome. What it does do however is give the gluten/casein intolerant person a chance to function at their best, without suffering the brain-fog or behaviour disturbances caused by the offending foods, and gives them back a sense of control over their own mind that they didn’t have before. I know… I’ve been there… and NO WAY am I going back to the way I was pre-diet!

Research has shown that the inability to break down gluten (the protein found in wheat, rye, oats, and barley) and casein (the protein in dairy products) may affect neurological processes in some children (and adults), causing or magnifying autistic behaviour. When these proteins are not fully broken down into amino acids the partially digested proteins form opioids (casomorphine and gliadomorphin) and enter the bloodstream. They can bind to the receptors and cause harmful effects in the brain just like a regular opiate. These opiates are highly addictive and can reach toxic levels. A chemical dependency may develop that makes it difficult to ‘quit’ eating foods containing these substances.

Part One: The Gluten Free Casein Free (GFCF) Diet

Yes, the GFCF diet does work – but you have to do it properly and for long enough to see any changes. With this diet, just keep things simple, and it’s relatively easy. If you’re prepared to do a lot more home cooking you don’t have to spend much extra money – some of the different GF flours can be more expensive than buying the usual wheat flour, but that’s still cheaper than buying commercially made GF breads and biscuits etc. And for your main meals you’ll save money by buying more fresh (and some frozen) foods like unprocessed meats, fish, eggs, vegetables, fruits, nuts, rice and legumes, which are ALL gluten and casein free and far healthier and less expensive than pre-packaged meals or stuff in cans – and they’re preservative free – another bonus!

The other thing you have to watch for when buying pre-packaged food of any type is that the gluten free foods are also dairy/casein free and that the dairy substitutes are also gluten free. After a while checking for these things becomes second nature, and you’ll become familiar with the different brands etc. Be warned though, the first couple of trips to the supermarket will take a very long time as you sort through what you can or can’t have anymore. Most GF products can be found in the “Health” section of the larger supermarkets (in my local area I shop at both Coles and Woolworths as they have a much larger range than Franklins, and Aldi doesn’t seem to have any GF products at all). Like me, you may have to go to more than one supermarket chain to get the range of products you want as they don’t all stock the same items. For example, my local Coles, Woolworths and Franklins all stock a large range “Freedom Foods” products but only Franklins has the coffee flavoured version of the chocolate “Triple Treat Brownies” stocked by Coles and Woolworths; Coles has “Freedom Foods” Quick Oats Porridge (GF oats) but Woolworths does not. There are a lot more GF products on the market than there used to be, but you just have to work out where to find them.

When it comes to dairy substitutes go for rice milk or soy milk – depending on taste preference or possible soy sensitivity – but make sure they’re gluten free. Many soy/rice milks have pearl barley, malt, barley malt and wheat maltodextrin added to them which means they’re not gluten free. There’s a few different brands of GF soy milks around so buy a few and do a taste test – you’ll eventually find one that you prefer over the others and in time your kids will get used to it. “So Good” and “Smooth White” soy milks are the ones my family and I like the best. So Good soy ice-cream is also excellent (but expensive compared to regular ice-cream). I’ve seen various soy cheeses come and go from my supermarket but some of them don’t taste so great, and you have to be really careful reading labels with those too.  For instance, “Simply Better” cheese tastes great but it has calcium caseinate added to it – so you can’t buy that one. Some cheese slices I found once that were dairy free (can’t remember the brand) had oats and something else added to them that wasn’t gluten free.

The only way you’ll see real results with this diet is to make certain there’s no hidden traces of gluten and/or casein in any of the foods (the presence of these is why some people think the diet doesn’t work, or the changes seen are minimal) and to be patient and stick at it. In the initial stages its best to do as much of your own cooking from basic ingredients as possible – that way you know exactly what’s in it. There are many good GF recipe books available and where milk is one of the ingredients, you can usually just substitute soy milk.

The first stage is to wean the child off dairy, as that’s the least complicated – cut out all cheese, change to a dairy free margarine such as “Nuttelex”, change to soy ice-cream, and for milky drinks mix cows milk with a tiny bit of soy/rice milk and gradually increase the soy/rice and decrease the cow so the changeover in flavour is gradual. It takes a lot of patience, but it WILL work if you stick with it – add some flavours for a start to help with the transition – even do a full on “milkshake” and add soy ice-cream to make the drinks really special. Just be sure to check the ingredients of the flavours for traces of gluten – and preferably steer clear of strawberry flavouring (the colour and the salicylate content will send the kids troppo, LOL) and don’t give too much chocolate flavouring (the amine content will make them grumpy, sullen and aggressive) – plain old sugar with a dash of vanilla essence is good, or pure maple syrup if you can afford it, or caramel if it’s GF. There are also various brands of soy yoghurts available – again check there’s no gluten – and do a taste test until you find a brand and flavour that the kids like. And if you’re worried about their calcium intake, use a GFCF supplement – ask your health food store or pharmacist to help you choose the right one.

If all goes well with cutting out dairy you may notice subtle changes happening after only a couple of weeks of being completely casein free. When my 3rd son T was only 7 (in 1999), I never told his teacher that I was cutting out dairy to see what effect it had on his behaviour – after about two weeks he brought home a school bronze award for “Improved Classroom Behaviour” – I now had the proof I needed to convince doubting relatives who thought I was depriving my child of “nutritious” dairy foods for nothing. Once I removed gluten as well, he improved even further, but it took a lot longer to see.

Speaking of doubting relatives (and teachers and anyone else who thinks they know what’s best for your child)… give them a written list of the sorts of foods your child can’t have, with a brief explanation of why not, but also give them a list of foods and drinks your child CAN have, and INSIST that they only offer foods from the list and nothing else! My own mother tried her best to sabotage my efforts – she still does – but my kids let her know she’s doing the wrong thing, and my husband supports me now too (finally!!! – he took a lot of convincing in the beginning as well.) Teachers are usually pretty good when the child is younger, but as the child grows older they expect the child to be more discerning about what they can or can’t have, thinking they are mature enough to do the right thing. Aspie kids aren’t always as “mature” as their peers, and teachers forget this and expect too much of them a lot of the time – especially when in mainstream classes.

Next – the gluten. Wait until the dairy changeover is well established before you start this phase, so your child doesn’t feel that suddenly everything familiar and yummy is being taken away all at once. There are lots of different gluten free breads available, but most are not dairy free. However, there are a few so be on the lookout for them via your Health Food store. “Country Life” brand specialty breads are sold in supermarkets but only their “Low GI” bread is  both GF and CF  (although it is “made in a plant that also produces products containing milk“). There are also packet bread mixes that are both GF and CF so you can make your own fresh yummy, moist, soft GFCF bread fairly quickly and easily – and you don’t need a bread maker to do it. Or, if you do happen to have a bread maker, there are lots of GFCF recipes you can try and also modify (internet and books) and get yummy results. If your child likes toast, try toasting the GFCF bread as toasting makes it taste more “normal” (but it’ll take longer in the toaster than wheat bread).

What to put on your GFCF bread? — Spreads such as honey, golden syrup, treacle, jams (jelly in US?), peanut butter are usually GFCF anyway so they don’t need to change, and if your Aussie kid loves Vegemite (not GF), change to MightyMite instead. The chocolate spreads like Nuttella are out due to their casein content, but there is now a chocolate spread by  “Sweet William” that is gluten free, dairy free and nut free, and it tastes great!  Most processed meats – devon, salami etc – are out – even ham and corned beef from the deli can contain gluten. Some of the “lite” hams sold sliced from supermarket delis are GF so if the staff aren’t certain, ask to see a wrapped, un-sliced slab of the stuff so you can read the ingredients on the label and check for yourself. There are lots of other healthy ideas you can come up with to put on toast or sandwiches that taste great.

Biscuits, cakes — most of the commercially made biscuits taste pretty good these days (although there are a few duds – eg. Freedom Foods “Chocolate Blitz” are not so great, but everything else in their range of biscuits is yummy) but GF biscuits are more expensive than wheat-based biscuits. And not all GF biscuits are CF as well, so again, check labels before buying. Anything with milk protein, milk solids, whey powder, casein, and caseinate is not dairy free, so in the early stages when you have to be really strict with the diet, these ones are out. Pre-made GFCF cakes are harder to find but Eskal’s Marble Cake is GFCF and is available in supermarkets. There are also many good GF cake mixes – just check for which ones are CF as well as GF – always read the ingredients listings before purchasing.

Pasta, spaghetti, noodles & rice – In Australia, the “Simple” brand of GF pastas is very good, as is “San Remo” GF pastas and spaghetti – they taste like the “real” thing. All the other brands I’ve tried are gluggy and soft – not al dente, LOL. You can also use various types of rice noodles – usually found in the Asian foods section. Rice is also a good staple to use in main meals in place of pasta or noodles – and rice is CHEAP! And you can add lots of yummy stuff to it.

So, with a bit of practice, the GFCF diet doesn’t have to be that difficult and it can end up being far healthier than what you were eating before. The easiest way to do it is to cook the same meals for ALL the family – after all, the others don’t need to eat gluten. The only thing we have in this house that’s not GF is the “normal” bread I buy for my husband and eldest son. Everything else they eat here is GFCF and it’s not an issue. We keep small “longlife” cartons of cows milk so guests can have “real” milk in their coffee, but they too get GFCF munchies and meals served up – its just so much easier that way – and the food IS really good.

As well as GFCF I also try to keep our diets fairly low in other food chemicals as well, by avoiding as many artificial additives as possible and also being aware of the amounts of food chemicals like salicylates and amines etc which occur naturally in fruit and vegetables and all other foods. In my opinion, Sue Dengate’s books and her website – www.fedup.com.au –  are probably the best sources of information for implementing a low chemical and also GFCF diet.

The effects of cutting out food additives, and reducing the amounts of “natural” food chemicals consumed, can be seen after only a couple of weeks, sometimes less, but the GF aspect of the GFCF diet takes much longer. Once you’ve successfully implemented a GFCF diet, you’ll probably have to wait at least 3 to 4 months before seeing any significant changes, but once they start happening, it’s worth it.

For more information and a good summary about the gluten free part of the GFCF diet, which foods to avoid and which to include, go to…
www.coeliac.com.au/gluten-free-diet-information.html.
(Just ignore the section on recommended dairy products on this page.)
For more detailed information about ingredients to avoid for the casein (dairy) free part of the GFCF diet go to…
www.ewell.com.au/news/cat/diets-foods/post/casein
Here is another list of ingredients to avoid on the GFCF diet…
mindd.org/s/archives.php/72-page.html
Autism SA has a good list of references regarding the GFCF diet at…
www.autismsa.org.au/html/strategies/therapies/glutenfree.html
This article – How Gluten Can Affect Your Mental Health – explains the links between gluten intolerance and schizophrenia, bi-polar and other mental health issues. After reading this article, scroll down the page for more good articles about the GFCF diet.This page – Food for the Brain – Autismhas some excellent advice on how to manage diet and nutrition to optimize overall health in autistic people. Includes information regarding improving digestion, balancing blood sugar, increasing omega 3 fats, increasing vitamins and minerals and avoiding food allergies (incl. gluten and casein).

Part Two: My Family’s Experiences with the GFCF Diet…

My third son ‘T’ was the first of my boys to be diagnosed with an autism spectrum disorder. From our contact with the Autism Association of NSW (now called Aspect) we learned a variety of behaviour management strategies but unfortunately these were not very successful. While he gradually improved over time the most dramatic improvement came with a change in his diet.

I found out about the gluten-free and casein-free (GFCF) diet after I had done a lot of internet research into autism in an attempt to find some other way of helping him. At the time I had no support for this from  any doctors, psychologists or family; many people were skeptical and some were openly against it, but I persevered and eventually proved that the GFCF diet did bring about huge improvements in T’s behaviour and learning abilities. That was a big contrast to more recent times when my youngest son was diagnosed and the paediatrician actually supported and encouraged me to keep him on the GFCF diet.

‘T’ had always been addicted to milk and wheat products and would eat almost nothing else, without major protest. After gradually introducing the GFCF diet he wasn’t so spaced out or absent, he was more “aware” and there was a spark of a more responsible and alert little boy emerging. He literally came “alive” on the GFCF diet and he was now able to concentrate on stuff and do things he could never do on his own before, such as dress himself in the mornings for school. His appetite improved and he started to eat a much more varied and nutritious diet and was more amenable to trying new tastes and textures. At school his behaviour and concentration improved to the point where he no longer stood out in the crowd for the wrong reasons. For the most part he is now instinctively able to pick up on what behaviour is acceptable and what is not whereas pre-diet he would do and say silly embarrassing things in public and not seem to realise that they weren’t acceptable. Some of this improvement can of course be attributed to simply getting older and wiser, but when I took him off his diet to do a food challenge, his behaviour regressed severely. Admittedly, it was a lot easier not worrying about the special diet, but eventually I put him back on it because it was so obvious it helped him to be at his best. Now he is 16 and although he gets frustrated about not being able to eat “normal” food all the time, which sets him apart from his peers, he WANTS to stay on the diet and has actually expressed gratitude to me for putting him on it. Occasionally, when he is out with friends (which I doubt he would be if he was not GFCF) or they have some special celebration at school, he does eat cake or pizza or a burger or whatever, which contains heaps of gluten and/or casein. He then suffers for it over the next few days with painful  and annoying mouth ulcers, occasionally cystitis-like symptoms and/or diarrhoea, very loud noisy voice (more monotone than usual) and big problems with concentration with bouts of “absent mindedness”, spacing out, as well as anxiety, depression and just feeling stupid, inadequate and confused. He hates the way it makes him feel, and doesn’t want to go back to feeling like that all the time.

My eldest son A (now 22) also recognises that he has many Aspie traits and agreed years ago to go dairy free (most of the time) which did help him, and he knows that going totally gluten free (as opposed to gluten reduced, which he is at the moment simply because he lives at home and I’m still cooking most of his meals) would probably help him with his concentration, occasional depression and social “confidence” as well, but he likes “Subway” and “real” bread too much, LOL …and he’s a big boy now so I can’t force him to do anything he doesn’t want to.

My second son J (18 ) has a lot of Aspie traits but also has more serious problems with depression, aggressive and self-destructive behaviour. When he was around 10 to 12 years old he had a couple of episodes of over-the-top extreme anger and verbal aggression directed at me, which he was unable to totally recall afterwards – like a Jekyll and Hyde personality change. This freaked him out as well – it was  like his “good, well mannered” self had blocked out all memory of the screaming, raging sh*t he had temporarily become. I did a lot of reading online and in books and found out that gluten intolerance can cause symptoms very much like schizophrenia – the Jekyll and Hyde effect – which is also what an allergy specialist doctor I consulted called it. It’s been difficult to get J to agree to stay GFCF – he’s been on it and off again over the past few years. He’s also suffered an inordinate amount of bullying at school in past years (which went unreported for far too long) simply because he’s “different”. When he sticks to a GFCF diet his whole demeanour changes; he’s much happier, no longer morose, and his body language and general attitude improves so he’s no longer so much of a target for bullying, and he’s better able to deal with the little bit of taunting that does still go on. After he’d been GFCF for a while, in late primary school,  his teachers noticed the wonderful change in him, and the pleasant change in the other kids’ interactions with him. But he eventually went off the diet. Then in high school other kids started to bully him again, more severely this time. Unfortunately J never told us or the school about this bullying until it was too late. He is generally polite and well-mannered but the harassment got too much for him to bear and eventually he snapped and retaliated inappropriately. After a lot of dialogue between us and the school the problem was resolved and the main perpetrator was eventually expelled after he severely harassed other kids as well. In the meantime, we took J to a psychologist for advice on anger management, and also put him back on the GFCF diet again. He’s been GFCF ever since and is reasonably co-operative (except for occasional infractions like pizza when out with his friends) and much happier, although he’s annoyed about being on the diet because of all the tasty  junk foods he feels he’s missing out on.

My youngest, B (11) is also GFCF – in fact I took him off his diet so he could be seen at his “worst” to get a diagnosis of Asperger’s in the hope of getting him some assistance at school. After the doctor determined that B did satisfy the criteria for a diagnosis of Mild Aspergers and ADD he told me to put him straight back on his GFCF low chemical diet. B needs assistance at school as he has learning difficulties which his brothers don’t have and is fast “slipping through the cracks” of the school system. Unfortunately he doesn’t get a lot of assistance each week, but at least it’s something. He’s in a mainstream class as he’s not severe enough to qualify for the autism classes at the school. The mainstream classes have been set up as composites (which is actually working quite well) so that all the kids in years 5 & 6 who need assistance are in the one class with a teacher’s aide in the classroom most of the time. B is reasonably co-operative about sticking to his diet (well, most of the time) and he’s definitely calmer and can concentrate better.

And then there’s lil’ ol’ me. I’m on the GFCF diet as well for the same reasons as my sons, plus being older I managed to develop a whole stack of digestive upsets that resolved once being GFCF, and in retrospect I realise my fertility problems were also linked to gluten – but that’s another story. I was a slightly weird kid, always a loner, very shy, never felt at ease except in my own company, and got teased a lot because I stuttered (still do actually) and had stick-out ears (got those fixed) and was just plain geeky and “strange” in my interactions with other people. I could never work out how other people just “knew” how to act and what to say or do. Most of my friends at school were also social outcasts as far as the politics of the popular kids was concerned. We were the nerds, geeks, freaks, wall-flowers – the ones without boyfriends, LOL. University life was much better; I felt much more at home there as a student. So much so that I got a job there after I graduated, as a Technical Officer in the School of Zoology, UNSW and stayed there for about 8 years, leaving shortly before the birth of my first son. I met my husband at uni too – an engineering student (yes, we know about engineers and autism, LOL).

Anyway, years ago, when researching ways to help my sons, so much of the reading I did about Aspergers/Autism etc was actually describing me, especially the info specifically about Aspie girls! It was such a relief to find I wasn’t alone, and also to find via the internet that so many Aspies are proud of their “Aspieness”. So, I’m a self-diagnosed Aspie who’s on the GFCF diet and will NEVER go off it. No way do I want the depression, anxiety, spacing out, mental “fog” and social ineptitude (she cringes with embarrassment at many past indiscretions) that went with gluten and casein intolerance. Not to mention the constant cravings for milk, milk and more milk whenever I had a headache or the strange breathing/chest sensations that I now know to be caused by milk. Because I was already an adult (early 40’s) by the time I tried the diet I don’t suppose the people around me noticed much of a difference in my behaviour – I had learned to behave in certain ways in certain situations, even if it didn’t come “naturally”. But I know how I felt and the mental changes that happened, which were so gradual that I didn’t actually notice them until the first time I went off the diet to do the food challenges and suddenly it all came flooding back. I knew then that gluten and casein were a BIG part of my problems with depression, anxiety, and spacing out and occasionally having these weird episodes where I knew I was saying the wrong thing (usually something embarrassingly inappropriate) but couldn’t do anything about it. It’s difficult to explain and still sound sane, LOL, but it felt like a “split personality” or maybe the Jekyll and Hyde thing I described earlier. One of my “personalities” was observing my other self from somewhere outside my body and I was powerless to intervene and stop myself from saying or doing the wrong thing. Even afterwards, all feelings of embarrassment were somehow repressed until days, weeks or even months later when it would suddenly hit me and I would die a thousand times over from retrospective embarrassment. Fortunately those episodes don’t happen anymore. I’ve been GFCF since 2000 – apart from when I did the initial food challenges the only time I’ve gone off the diet in that time was once a couple of years ago, for a month, so I could be tested again for Coeliac Disease. During that time I spaced out often, almost passed out once, was generally miserable, anxious and depressed (but I got through knowing that it was all “chemical” and it would go away once I went back to GFCF) and had severe, painful digestive upsets as well. In spite of all that my Coeliac tests came back negative – so it seems I have “Non-Coeliac Gluten Intolerance”.

The scariest part of how gluten and casein affect my brain is the “spacing out” and the “split consciousness” thing and the effects these have on my ability to safely drive a car! People only think of drugs and alcohol affecting driving, but food intolerances can be just as dangerous! …another reason why I’m so keen to instill this knowledge into my sons as their moods and driving ability can be severely affected (eg. zoning out, not being aware of what’s happening around them, or even “road rage”) and that scares the sh*t outa me!

I guess the point of this long ramble is, that even though you might not see big changes in your kids’ behaviour when you start the GFCF diet, please do try to stick at it, even though at times it might seem like too much hard work; especially if your child is one who won’t eat anything other than wheat bread sandwiches or wheat-based cereals, biscuits etc or who drinks copious amounts of milk to the exclusion of all else and constantly craves milk and wheat-based products. All these things are signs of an addiction which is probably screwing with their brain chemistry so much that they cannot possibly show you “their very best selves” while trapped in the mental fog that it causes. Maybe they’re not old enough or not “awakened” enough to describe their feelings in terms that you can understand and take seriously, or to let you know that “something” changes inside their mind when they go on or off the diet. You never know, eventually they might even thank you for it when they realise they feel better on the GFCF diet and that going off the diet brings back all the old, scary and confused feelings. I sometimes wonder how different my life might have been if I was on the GFCF diet since childhood. I would still have been an Aspie kid, but a much more “switched on”, self-confident and perhaps happier and less confused one.

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It always helps to get more than one opinion so if you’re reading my page because you’re wondering whether or not to try the GFCF diet, here’s some other websites you might find interesting …just click on the banners below.

nourish-me(Based on the Gold Coast, Queensland, Australia)

applestooranges1Products and services available in Victoria, BC, Canada (not Victoria, Australia)

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67 thoughts on “Personal Experiences with the GFCF Diet

  1. I thoroughly enjoyed reading this. My son is GFCF due to Autism and the changes have been amazing.

    I believe so much in this diet that I’ve started a business helping other families with autistic children get on the diet and stay on it. Like you said, so many either don’t try because it’s overwhelming or they try it and quit because it’s hard to keep up with it. So my goal is to help people stay with it long enough to see the changes so that will be motivation to keep their child on the diet.

    Anyway, thanks for the good read! Congratulations on your success with your children.

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  2. Thanks Lori …it’s great to get such positive feedback!
    Your website and business is a wonderful idea too!
    I decided to put a more obvious link to it here on my page so people can read of your experiences with the diet as well. 😀

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  3. Great post! The only thing I’d have to take issue with though is the mischaracterization of schizophrenia–it’s not at all a Jekyll/Hyde syndrome, nor anything like a split personality disorder. It encompasses spaciness, brain fog, abnormal or disorganized thinking, and altered perceptual experiences (interestingly, it also responds well to a GF/CF diet). I don’t know how that Jekyll/Hyde personality disorder myth got started, but I’ve seen it crop up a lot on blogs in particular.

    Anyway, glad to see you’re doing well on the diet, and thanks for sharing your experience in this helpful post!

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  4. I just have started the gfcf diet its really hard and I’m doing my very best to stay on it. Starting on this diet does the child get very moody? When will it stop?

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    1. Mood swings and behaviour changes can be taken as a sign that the diet is working, and could be withdrawal symptoms. With my kids I found the moodiness only lasted a couple of weeks or so until their bodies started to get used to not having the offending substances, but everyone is different and not everyone will have this reaction, while others may take a little longer to get through this phase. But remember, the fact that a reaction is happening (even if the behaviour and moods are really bad) is a good thing and shows the GFCF diet is having an effect. Just remember that after a few months, even if everything is going along nicely and there’s been a great overall improvement, that you need to do the gluten and casein challenges to double check that the diet is really necessary. If behaviour regresses after the challenges then you’ll know for certain that the need for the GFCF diet is validated. Keep up the hard work, as it’ll be well worth it …and it does definitely get easier with time! 🙂

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  5. Thank you so much for sharing your stories, and my link. It is important that we tell these stories because the medical establishment doesn’t seem to be listening. As a result parents are discouraged from trying GFCF.

    My experience is so much like yours with GFCF and the way I moved through the world before that diet. I don’t think I have Aspergers, but I did wonder on that for years because I do have so many of the traits. I am more NT when it comes to social relatedness. I didn’t have a lot of those painful social experiences that Aspies describe BUT….I also felt like I was doing a lot of pretending. When I was little I taught myself to hyperfocus on people in social situations and as long as I did that I could read social cues. Where it falls apart, and still does, is in groups because I can’t process all that shifting from one person to another so well, then I start acting goofy. I fit more into the pattern of Nonverbal Learning Disorder than Aspergers, though there is some debate as to whether NVLD should really just be considered a form of Aspergers. I’ve had many people with Asperger say they think I have it…..is that a thing….where someone walks in the room and Aspies know if that person is Aspie? Who knows. I have a son with moderate Autism so I suppose it is possible.

    I had a lot of the literal aspects of Aspie kids: didn’t understand humor, black and white thinking, hyperfocus, passionate about a few topics, didn’t understand my own emotions, talked endlessly…but I was always interested in other people, even if they were talking on a topic that I didn’t know about I could be swept up in their passion for the subject – That seems different from how Aspies describe themselves to me.

    Many of my Aspie traits receded once I went GFCF, I started to understand humor and even attempt to use it sometimes and I’m not so literal now. The tempo of my processing has quickened. I’d still say I’m a bit different, but not disabled by it, if that makes sense.

    I read an interesting article about a study done on girls with Aspergers and eating disorders. Apparently they have them at a disproportionate rate than NT girls:
    http://www.timesonline.co.uk/tol/life_and_style/health/features/article2272080.ece
    Growing up my head always felt like a lit match and I was spaced out, much as you described. Instead of craving foods with wheat or dairy like a lot of people with the problem describe, I only felt better when I ate nothing at all…..so I’d do that, for days, and eventually start eating again around the forth day until I got to feeling so bad and they cycle began again. Because I was a teenager and had bouts of not eating people assumed I was anorexic. But I knew I wasn’t because I wasn’t doing it for the same reasons these other girls were: I didn’t think I was fat and actually wanted to eat, but couldn’t (kind of like how a lot of our Autistic kids self limit on food). I couldn’t describe this to anyone because I didn’t understand it myself. When I read this article I had an inner knowing that this was why I did what I did and I contacted the researcher and told her to look into food in terms of these girls.. And incidently, I have never had the urge not to eat since I’ve been GFCF.

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    1. I’m always happy to share links that I think are important. 🙂 As you say, the medical profession are not listening. Recently my 18 year old son went to a doctor (not our usual GP) and when asked about any allergies etc he told the doctor about his need to stick to GFCF mainly because of behavioural issues and also physical symptoms of food intolerance such as mouth ulcers and a few other things. The doctor asked if he was a coeliac and when my son said he’d not been diagnosed as such, the doc basically scoffed at him and made some derogatory comment about “trendy” diets. Closed-minded “know-it-all” attitudes like that within the medical profession really make me angry because they result in people suffering needlessly and/or being given drugs or other treatments that are unnecessary when all they have to do is modify their diet to solve the problem! At least there are a few enlightened doctors around and our usual GP is one as he DOES actually listen to my concerns and take me seriously when I tell him how gluten/casein affect me and my kids. Hopefully the researcher you contacted will take that information seriously too and do more studies and publish more about it.

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  6. as a new gfcf dieter im finding it hard to get much written help!!!! my doc got me to try no gluten and dairy for 12 weeks so i read lables and had mostly fresh fruit and veg with soy milk as my ‘dairy’. i have found it has helped with everything but is very boring and if Im to stick to it and see grate changes i will need to re-learn my eating habits and add a little spice.. my son also has shown to benifit from removing salicylates an amiens in the past and i do wounder if the gfcf diet would help his probs to? my docs advice was to reserch on the internet for new idears to cook and snack on but all i keep coming up with is stuff from overseas, all book stores i go to can’t find anything on gfcf or have a book on gluten free and another on dairy free.. were dose a country girl get some help in australia????? and why am i finding it so hard ????

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    1. It certainly wouldn’t hurt to try your son on a gfcf diet for at least 3 months or so to see how he goes. I’ve found it takes at least 3 months, sometimes 4 to notice changes due to gluten, but cutting out dairy only took about 2 weeks to notice changes, so do the dairy first.

      If your doctor will write a letter for you stating that you are a person who is “diagnosed as requiring a gluten free diet” you will be able to join the coeliac society for your state (you don’t have to actually have coeliac disease, just a gluten-related problem that requires a gf diet) …see http://coeliacsociety.com.au and click on the “How do I join?” link. On joining they send out an information pack with recipes and lots of other useful info, and you get their glossy magazine regularly posted to you with heaps more info and recipes. There’s also lots of ads and other brochures inside the magazines for the many different brands of delightfully tasty gf and gfcf foods available in Australia, some of which you can order online if your local stores don’t have them. Another advantage is you also get a discount card to be used at all Coles supermarkets on certain gf specials each month. A whole new world of wonderful gf information will open up to you on joining the Coeliac Society of Australia! 😀

      For gluten free recipes which contain milk, you can usually just substitute a gf soy milk (always check the soy milk ingredients as not all are gf). For butter use Nuttelex margarine instead.

      There’s some really yummy gfcf stuff out there if you know what to look for, much of it available in your local Coles/Woolworths/Franklins/IGA supermarkets. Here’s some more Aussie links that you might find helpful, some are product sites (some of which also have recipes), others are just recipes…

      Sue Dengate’s website http://www.fedupwithfoodadditives.info/ …for food intolerance in general. She also has recipe books which include some gfcf – you could get your bookshop to order her books for you – all the info you need re her books is on her website.

      http://www.glutenfreeshop.com.au/
      http://allrecipes.com.au/recipes/gluten-free-recipes.aspx
      http://www.taste.com.au/recipes/3327/gluten+dairy+free+muffins
      http://www.sweetwilliam.com.au/ GFCF CHOCOLATE – excellent stuff! 😀
      http://www.abc.net.au/health/healthyliving/dietrecipes/recipes/stories/2008/05/07/1913385.htm
      http://www.orgran.com/
      http://www.kezs.com.au/
      http://www.choicesglutenfree.com.au/
      http://www.whatcanieat.com.au/
      http://www.homelife.com.au/life+ideas/food/recipe+gluten+free+lemon+meringue+pie,4385
      http://www.ledanutrition.com/
      http://www.fitnessfix.com.au/gluten-and-dairy-free-banana-pancakes/
      http://www.wheatfree.com.au/
      http://www.soylife.com.au/
      http://www.sogood.sanitarium.com.au/

      There’s heaps more …just do a Google search for “gluten dairy free” etc and click on “Pages from Australia” .

      As for books, I have a few gf and gfcf recipe books that I don’t really use much (apart from Sue Dengate’s books which I have used a LOT) as many of the recipes are too fiddly to bother with, or have ingredients that I don’t normally have in my pantry. I found the info pack and the magazines from the Coeliac Society of Australia to be much more useful.

      I haven’t got time to copy out book titles at the moment but I can do so later if you really want to order any of them from your book shop. Just let me know.

      Cheers,
      Jenny

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  7. thankyou thats so much help an will give me more to start with i will see my doc and look at the stuff you’ve shown me an go on from there thanks again. :-)!

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  8. Jenny,

    Wow, thank you for this post… I have been advised to try my autistic/adhd son (3yrs) on a gfcf diet.. We are currently on day 4.. To say the idea is not scary is an understatement. I have found it difficult to find information and some recipies I have tried have failed miserably.. Thank you for the information you have given. Its good to get some brands that I can look for as I am truly confused as to what I am looking at on a label (which I am suppose to stay away from). I have seen the links above and will have a look at them. Your information on your family was insightful and gave me a hope. My son is the J&H as you mentioned above. His behaviour is extremely erratic. He is a beautiful little boy who everyone thinks butter wont melt in his mouth, till at home, and when something doesnt go his way, all hell breaks loose. His speech is minimal, so a lot is possibly frustration but when he is striking out at his brother, I can’t let it go by. My concern is when he gets a little older, he will start to damage property or seriously hurt someone with his tantrums.

    Thank you again for the info, you have just given me that small ray of sunshine…

    Rachael.

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    1. Hi Rachael

      Glad I could help. 🙂 Gluten free and dairy free foods are a lot easier to get now than when I first started this diet, which is wonderful. However, I read recently that the GFCF diet may not be as effective for a lot of people now as it used to be. This could be because of the easy availability of so many processed GF products that, unlike the homemade stuff, are full of the same preservatives and colours etc as all the other “regular” cakes, breads, biscuits etc. So, if you don’t see the amazing results you were hoping for it may be due to other stuff in the GFCF food that you buy. IF this happens, rather than giving up on GFCF you could try keeping your son’s GFCF diet as “clean” and natural as possible with lots of home cooking to see if this helps. Then you’ll know for certain if GFCF works for him if there’s no other food chemicals to interfere with the results. Sue Dengate’s website — Food Intolerance Network — is especially good for getting info about what other food chemicals to avoid.

      Cheers,
      Jenny

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    1. Yep, soy is fine on the GFCF diet as long as you check the ingredients of the soy products to ensure that they are also gluten free and casein free. Many soy milks have gluten added in the form of barley extract, barley malt, pearl barley etc and sometimes wheat-based maltodextrin, and some soy cheeses have calcium caseinate added to thicken them and/or oat or wheat products in them. Just read the labels very carefully before you buy anything. 🙂

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      1. I understand some people can also be soy-intolerant. Non-fermented soy (ie soy milk, soy cheese) can be difficult for some people to digest. For this reason I was advised when starting GFCF to also eliminate soy. At first – I just couldn’t – the only suitable milk substitute I could find was soy BUT – after only a week in I have discovered one brand of RICE milk which I am actually beginning to enjoy. So – I’ve cut out soy milk now. However, alot of GFCF products DO have soy added – or at least ‘traces So although I’ve managed to cut my soy down alot – I have not managed to go completely soy free – yet … BUT I’m working on it. Soy will then be one of my ‘challenges’.

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        1. I’ve tried to cut back on the amount of soy I have in my diet and have switched to rice milk also. I’ve found a few brands that are quite nice, with not much difference between them, plus one that tastes good but “sinks” and doesn’t stay mixed through a cup of coffee or tea, so needless to say that one doesn’t get bought by me anymore. 🙂 I also make sure the Nuttelex margarine I use is a soy-free variety (Nuttelex make a few different types of marg. – some have soy) Unfortunately, as you say, soy has found its way in to a lot of things so it does make it difficult to go soy-free.

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        2. wow – I didn’t even think of checking my Nuttelex for soy! … so I just did – and thankfully it says ‘soy free’ 🙂

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  9. We have only started our Aspie daughter on GFCF together with Houston enzymes, the changes are already incredible. The enzymes help to cover trip ups 🙂

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    1. That’s great news. I hadn’t heard of Houston enzymes before so I Googled to find out. Definitely something worth looking into more and maybe trying myself. 🙂

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  10. Your writing about your experience was so useful to me. I am from india. My son is on the e spectrum and on a gfcf diet since over 18months. But now he has realised that others are eating different food. So he wants the same. Since starting the diet I immediately noticed positive changes in him. But now I am confused about what I should do. How long do I continue the diet? Also teachers at t school might find it difficult to stop him from eating other kid’s food”.

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    1. Hi Meghana,

      I believe that as you have found your son improves when on the diet he should really stay on it forever. From my own experience and that of my sons I know this is difficult but every time any of us break the diet we always notice adverse effects. Sometimes it takes a couple of days for the symptoms to show, other times it is much quicker, but it always happens. Other people also notice the adverse changes in our behaviour. For example, my second son who is now 21 is having the most difficulty sticking to the diet. He likes to eat ‘normal’ food and does so whenever he can. His employers noticed he was not performing as well at work and he was also grumpy and angry all the time. The car accidents he has had have always turned out to be after he has admitted to breaking the diet long term and have been due to inattention and ‘spacing out’ due to gluten and casein in his brain, affecting his thinking. He goes back to the diet but eventually breaks it again. I seriously worry about his safety because of his refusal to stick to the diet properly. He knows how it affects him but he just doesn’t take it as seriously as he should.

      My 3rd son who is 19 is also on the diet but he hates the way he feels and the way it affects his ability to think clearly if he breaks the diet so he does stick to it properly and is thankful I put him on it when he was young as he can remember what he was like pre GFCF diet and never wants to go back to that again.

      It is a battle but I am managing to keep my 4th son on the GFCF diet also. He occasionally breaks it and his behaviour suffers as well, but he realises being ‘under the influence’ of gluten/casein makes him more of a target of bullying so he is reasonably good about eating the right things.

      I know your son is only young but perhaps when he is older he will thank you for keeping him on the diet. You need to insist that he sticks to his diet, and you also need to explain to his teachers how important it is that he does not eat other kids’ food. If he doesn’t stick to the diet you will probably find that, like my sons, his behaviour regresses and becomes ‘more autistic’ again. Sorry to say but there really is no other way but to stick to the diet if it is working. It would be such a shame not to.

      I wish you good luck and success. 🙂

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  11. Thanks for your post! My four year old son was diagnosed with PDD-NOS/High Functioning Autism last Summer. I put him on a GFCF diet two weeks ago. My hope is that it wll help with his variable attention and impulsivity so that he can avoid medications in the future. His doctor is already talking about medicating him when he gets into Elementary School (first 5 to 7 years of school in the US) to help him focus and not be disruptive. The thought of drugging him makes me very uncomfortable. However, since putting him on the diet we’ve actually seen an increase in the undesirable behaviors. Even his preschool teacher and Kumon academic enrichment instructor have made commented on his increased impulsivity in the classroom. I’m hoping that this is related to some initial withdrawal symptoms and that I’m not actually making things worse. Thoughts?

    Thanks!
    Jacki

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    1. Personally I think this reaction is related to withdrawal symptoms, which in itself is proof that the diet is working. However, if you remove too many things in one go it could make it harder for him to adjust. I started by removing dairy first, as it was the easiest, and noticed improvements after a couple of weeks. Once that change was settled (about 3 weeks) I then removed gluten, which eventually showed a definite improvement after about 3 to 4 months.

      I assume you removed casein and gluten together? As you’ve been going for 2 weeks already I guess rather than reintroduce something you have already removed (which could cause behaviour problems rather than alleviating them) the best thing is to continue with his current diet and you should gradually see a calming of these behaviours as his body adjusts to the lack of whatever substance(s) that was/were causing the problems.

      Hang in there, and good luck …it does get better! 🙂

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  12. Just wanted to thank you for writing this. I have to do this diet because of allergies, have been allergic to casein for a couple of years now, and just started reacting to wheat gluten too. It’s good to hear that you can keep up a normal household even withouth wheat and milk (my boyfriend is slightly scared of all my “special food” and don’t want to try it) and remarkable that it affects depression and spacing out that much. I have been wondering about bi polar disorder and depression and whatnot for some time not, often being sort of a downer for no reason, and…well, basically the story you wrote about yourself. So just, thanks.. 🙂 It helps finding stories like this.

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  13. Loved reading your article! Aways thought something was different with my son even when he was little, he always met the “major” milestones but something just seemed off. Last year during his second year of prescool his teacher wanted to meet with me due to him seeming zoned out during group activities and not progressing as much as he should. A few weeks later I started him on organic/ gluten free milk after trying soy/almond ect, which he would not drink. Also started organic/ preservative free foods. Wow the difference! His teacher came up to me and asked if I started the new diet I told her about, and said she was amazed at the difference in him! I am now in the process of starting GFCF diet to see if there is anymore improvement, want to make sure I am doing everything I can for him, had put off doing the GFCF diet due to feeling very overwhelmed and afraid he would not eat! But we are one week 1 and a little bit of struggle but not as bad as I thought!

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    1. Glad to hear there’s been noticeable improvements already! Always good when somebody like a teacher notices the changes too as that’s your “proof” to quote to family members or others who might not believe that food could have any effect and are worried that you’re depriving him of “good” foods unnecessarily …had personal experience with that one, lol. The key to changing from “normal” to GFCF is to keep the changes gradual and they’re more likely to be accepted. It’s a bit easier with cows’ milk to soy/almond/rice milk as in the beginning you can mix them 50/50 then gradually add less cows milk to the mix each time. If he likes toast, try toasting the GF bread when you first give it to him – it often tastes better that way at first and the difference is less noticeable. Sounds like you’re going ok so far so keep up the good work! 🙂

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  14. Hi

    My son has a lot of the traits you describe. He often tells me how certain foods seem to make his body start to shut down so I was considering passing on this diet .I found your article really helpful. But I’m worried about what you said about the cravings for milk.

    I’m thinking that the reason these children have a craving for milk is because they can’t absorb calcium very well so maybe it’s important they take calcium in pill form if they go on this diet?

    Wikipedia says

    A 2008 study found that boys with autism had significantly thinner bones than non-autistic boys, starting around age 5–6 years, and that boys using casein-free diets had nearly twice the bone thickness deficiency as boys with minimally restricted or unrestricted diets. It is not known which other factors contribute to thin bones in boys with autism, but it appears that a casein-free diet may contribute to calcium and vitamin D deficiencies that lead to decreased bone development and increased risk of broken bones.

    Just thought you might want to know. No one wants to put their child at risk. I’m still thinking about recommending the diet though. I’m sure it would help him. (He’s an adult now and living on his own).

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    1. Calcium is available in many other foods so I tend to think that the ‘addiction’ to milk is due to the inability to metabolize casein. My son was also ‘addicted’ to wheat products as well, most likely because of the similar problems with gluten, which could also cause malabsorption problems, similar to Coeliac Disease, which in turn leads to low calcium levels and bone density problems. Naturally if he’s going to remove a source of calcium from his diet you should be replacing it with something else – either supplements or calcium fortified soy/rice milk products etc. Before going on the GFCF diet he should get tested for Coeliac Disease first. 🙂

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  15. Hi.

    I was pleased to find your such inspiring post on GFCF diet.
    This diet also helped our daughter. It’s been 10 years since the time she got her diagnosis (she was about 3 years old then) and 6 years since our victory over her PDD-NOS. Nobody now can say that something was wrong with her ever! She speaks 2 languages (learns the third one), performs high at school, enjoys many different activities (like piano playing, music composing, drawing, doing gymnastics). Even though our daughter is a little shy and not loud, she’s got good friends and they really love her!
    The biggest part of our victory belongs to GFCF diet. At least we think so. We also did a lot of other interventions like ABA, supplements and therapies. But the diet provided necessary basis that made everything else work or work at a better rate..
    Now I finally decided to share our experience with the Russian audience (I was born there) on some autism forum. But unfortunately I found very limited public understanding of GI and brain connection there. I got my degree in nutrition in US a few years ago and hope to do as much as could in order to change negative opinion on GFCF diet in Russia. May I ask you to use your example in describing the case of GFCF diet?
    Also I wanted to mention that 5 years ago I discovered that there are special enzymes designed for gluten sensitivity (not celiac disease!!!) It is called DPPIV. It really helps us now to deal with gluten. I still make a lot of GFCF foods and bake healthier breads and etc.But for preteen child (and teenager) it is almost impossible to avoid gluten completely. The enzymes help to break down gluten and also do some healing for the intestines. They say it helps with casein too, since the structure of those peptides is similar.

    It was nice reading your post.

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    1. Thank you for commenting. Yes, I’m happy for you to use my description of using GFCF to try to help change the negative opinion of it in Russia. 🙂 The information on DPPIV sounds promising …something else for me to find out more about! Glad to hear you enjoyed reading my post and nice to know it was helpful to you.

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    2. We used the enzymes and they did not seem to make any difference. I had my hopes up for it as well but unfortunately …… 😦 There must be different causes for the gluten and casein intolerance.

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  16. Im doing research on curing ASD with food (GFCF) Do you know of a checklist or question: a before and after GFCF diet????
    Thanks, L

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    1. No, sorry, I don’t know of any such questionnaire or checklist. I think most people just go by their own experience of what they or their kids couldn’t do before the diet but can do afterwards, and of course any regression when the diet is stopped.

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    2. Do not ever claim that you Can cure asd with The diet, be ause that would be a false claim. You can majorly relieve symptoms that is true

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  17. Thanks for writing this entry. I found it really interesting, especially where my son is concerned. I have an almost 4 year old boy who I have been told is showing signs of being somewhere on the spectrum, adhd or even possibly having a sensory motor disorder. I have had him on a gf diet since he was 2.5 but took him off recently to have blood work done to check for celiac. I am a celiac with past symptoms of iron deficiency/B12 anemia and I just detected that his diet was somehow affecting his behaviour. His blood work came back negative for celiac and his iron levels are low, but normal range low (not anaemic). Since being back on gluten, his behaviour has not changed that much, which surprised us, but then his behaviour has not been great over the past year in general even with the gf diet. He does however, now have horrible constipation and has been chewing his hand/shirt collar a lot, so I’m not sure what’s going on.

    I have never tried him on a casein free diet but am interested in it now. If I try it, is it recommended that he be on a gluten free and casein free diet at the same time? I found it really interesting that you said that when you have milk you crave more milk – is that common? My son has always been a huge milk drinker – we have tried to work on toning it down. Today, for example, he has been drinking non-stop, more than he has in days and he has been horribly irritable all day. He has never had tummy troubles with milk so I have never even linked it to behaviour. The one other thing that you mentioned was that your youngest son would talk in a very loud noisy voice after having gluten/casein. Is that a common irritation symptom? We had my son’s hearing tested a couple months back because he is always so loud, but of course his hearing is fine. There are just all of these little things that we can’t quite piece together…

    Any further advice would be great – thanks again for this piece!

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    1. Hi Janine,

      Sorry for taking so long to respond. If your son is already back on a gluten free diet it is best to leave him on it when you decided to remove casein. That way the only change in his diet will be the lack of casein so you’ll know if any changes in his behaviour are caused by the casein removal or not. People tend to crave more of the substance they are addicted to so in cases where casein is not being digested properly and this protein is not broken down into amino acids a person can become addicted to the resulting opioid (casomorphine) that forms and enters the bloodstream. This also means that when you reduce and finally remove milk and other dairy from his diet he may have withdrawal symptoms whereby his behaviour gets worse before it gets better. Even if this happens, it’s a good thing as it shows that milk is actually having an adverse effect on him. Remember though to substitute calcium fortified GF soy or rice milk so that his diet is still balanced and healthy.

      I didn’t know my 3rd son had a problem with milk (he had no known digestive upsets from it) until I took him off it and saw the improvement in his behaviour. As I mentioned in my article, his teachers noticed a big improvement too and they hadn’t been told to look for anything. He sucked his thumb until quite an advanced age (although never in public once he was older, or at school) and I remember him announcing that he was pleased about going off milk because now he could suck his thumb and breathe at the same time! 😀 His thumb sucking eventually stopped too, so maybe there was some connection there???? …or maybe he just tried harder to break that habit once he understood that “big boys” didn’t do it, lol. His thumb would still automatically go into his mouth as he drifted off to sleep at night, even around 7 or 8 years of age (and I would quietly remove it when I noticed).

      The aptly named condition Megaphonia (talking too loudly) is a very common symptom of food intolerance in general. My 2nd son was also very loud, and seemed not to hear some things very well so we had his hearing tested too but were told his hearing was fine and any apparent hearing difficulty was just due to inattention. His foghorn voice toned down and his attention improved when I put him on a GFCF diet too and also reduced the artifical colours, preservatives etc in his diet and cut down on foods high in salicylates. You may find it is more than just milk that your son reacts to.

      Anyway, I hope this info is helpful, and I wish you the best in helping your son to be his “very best self”. 😀

      Cheers,
      Jenny

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      1. problem is the qualified medical advice, I am running around the medical mill and they all are dismissing the fact that my daughter responds better to a GFCF diet.

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        1. Well, if you notice the improvement in her when on GFCF then stick with it, making sure of course that she gets a balanced diet that still supplies the necessary nutrients from other sources. Doctors and a psychologist that I took my 3rd son to see were dismissive of the GFCF diet too but we stuck with it anyway, and my son and I are both glad we did. 🙂

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  18. I wrote a couple of entries back and just wanted to thank you for your response. My son has now been on the GFCF diet for over a month and we have noticed a HUGE difference in his behaviour. We have also started him on probiotics that we were referred to by our naturopath and the combination of the diet and the probiotics seem to have calmed my son right down. He is much more focused, calm and “together”. We are still exploring whether there are other allergens that may be affecting him. The difference is almost night and day for my son and with him starting school soon, I’m really glad that we tried the diet. I’m still trying to work out the best sources for calcium. Any suggestions for a kid that refuses to drink any of the alternative drinks. Soy yogurt seems to be the best we can do at the moment…

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    1. That’s great to hear that the GFCF diet works for him and now you have something positive to work with. 🙂 As for calcium, perhaps you could try supplements? I know Caltrate make fruit flavoured chewable supplements so maybe you could try something like that? The only downside of this would be that they do contain artificial colours and other ingredients that may adversely affect his behaviour, but you could always trial them or any other brand of chewables to see if they do have any bad effects on him or not. I assume with the soy/rice milks you’ve tried flavoring it – sugar and vanilla or caramel are good choices that shouldn’t affect his behaviour – and then gradually reduce the flavouring over time. There’s also so many different brands of soy or rice milks available and some of them taste ok while others are foul – I guess you’ve already tried quite a few. My boys like “So Good Regular” the best as to them it tasted the most “milk-like”. They didn’t like it at first until I started making ‘real’ milkshakes with the soy milk plus flavouring and So Good Soy icecream to make it thick and frothy. Eventually they acclimatised to the soy taste and started drinking it straight and I didn’t have to make milkshakes all the time, only sometimes for a special treat. Another idea could be to make banana smoothies with soymilk and some sugar added – a couple of strawberries added makes it tasty too, and pink. It can take a while but sometimes persistence pays off in the end. Good luck! 😀

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  19. Oh, wow, I love your careful descriptions of the effects of the GFCF diet. I have some Asperger’s traits, a lot off gluten and A1 dairy products. My reactions were a LOT quicker than your family’s. In fact, each time I’d quit gluten or milk, on the 3rd morning I’d wake to something like the Resurrection, complete with angels singing the Hallelujah chorus! So when I read about the Devil in the Milk, I knew it explained all the stories I’d heard about goat milk. I found someone with a Guernsey cow, no brainfog from her milk. I’ve been working on this for 3 years, and know how to find the right cows…. please reply, I’m no good at doing websites, and what I’ve learned could be helpful to others if you’d post some of it. Thanks!

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    1. Hi Donna, thanks for commenting. Here in Australia we can buy A2 milk (from Guernsey cows I guess???) which doesn’t have the same bad effects as A1 milk. My eldest son has switched to A2 as he’s found it doesn’t cause “brain fog”, but for me it doesn’t have quite the same effect so I mostly use soy milk and avoid cows’ milk altogether. 🙂

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  20. im thinking of starting the gfcf diet for me and my children. ive been reading up a lot on this diet because my eldest as had problems with constipation since being born and ive had to cut a lot of food out of her diet because of this. my eldest also as behavioural problems, im just worried about how to get enough calcium in our diet without using vitamin supplements. can I just change our diet or would it be best to see our doctor first. any information appreciated thanks

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    1. If you replace milk with calcium fortified (and gluten free) soy/rice/almond “milk” and also try other calcium fortified non-dairy products such as soy yoghurt you should be ok. Many fruits, vegetables and other foods are also a good source of calcium so if you increase the amount of those in your diet it will help too, as well as increasing the amount of fibre which may help with your eldest’s constipation problems. The following article has some good information that might help http://blissreturned.wordpress.com/2012/01/25/calcium-the-best-foods-for-bones-fruits-and-vegetables/ Canned salmon (with the bones included) is also another tasty source of calcium. However, if you don’t feel confident about changing your diet it might be best to see your doctor or maybe a dietitian to help guide you. Hope this helps. 😀

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  21. I’ve been gluten free for a couple months and recently went back on to do a little experiment….wow, my emotions have become unstable and the worst symptom is the brain fog and drowsiness… I’m supposed to be planning a casein and gluten free diet to get back on to in a few days but I’m so dreamy I could easily just sit and stare at a wall for the next few days….phew. You really see what the gluten has been doing to you when you go gluten free, reap the benefits, then try the gluten again…..!!!

    Also now I know why I was so addicted to sweet bakery in the past….The drowsy dreaminess can be subconsciously addictive I think, as it’s a bit like being drunk, you can’t think of any of your problems! lol…. The physical effects are nothing compared to the mental…

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  22. My 29 year old son has been on this diet for the last 1 1/2 years. After reading and researching a lot I decided that it wouldn’t hurt to try it. I said we would give it at least 6 months to see if there were any real changes and if there was not we would go back to a normal diet. We started with the dairy free for about 3 months and then we went gluten free as well as soya free. We have seen lots of good changes and do not want to go back, but recently we have been experiencing a problem with sleep and bed wetting. It has been going on for about the last 3-6 months and I don’t know if it is because of the diet or something else. Has anyone had this type of problem. My son always use to sleep minimum 10-12 hours at night. He loved his sleep. Now he is waking up stripping his bed down to nothing, emptying his closet of almost everything, sometimes even taking off clothes and then because he is cold he is bedwetting. He will eventually fall back to sleep but it takes a while. I have seen myself stay up till 1-2 in the morning till I can’t stay up anymore and he is still going. I will go in every 15min or so and he will be sitting up, bed stripped or started, light sometimes on and I will take him to the washroom, remake his bed and put him back to bed and it just keeps continuing. I do not want to take him off his diet, but I am wondering if there is something I am missing or if the diet is actually having a reverse effect somehow. If anyone has experienced this please let me know. Thanks

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  23. Have you changed anything in the diet recently like perhaps compensating with extra sugar or something like that? – I am a big fan of the Paleo diet lately (even stricter than GFCF – no grains, no sugar for example) .

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    1. Apart from trying to cut back on sugar and eat fewer processed carbs in general (more for weightloss reasons as I need to lose weight) I haven’t made any major changes to the diet. 🙂

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  24. Hello!

    I’m a 18 year old boy with asperger, and I really enjoy your storytelling of your boys with asperger and how you helped them with GFCF diet. I’m going to try it!

    Btw, I actually think asperger/and other ASD are actually the result of future evolution, look at this table:

    Thanks,
    Pax 🙂

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    1. Glad you’ve found inspiration in my stories. 🙂 You could be right about the future evolution idea, I’ve heard that before too. Interesting table of skills and character traits, though generalizations don’t apply to everyone. Do you know where the information came from originally? Good luck with the diet! 😀

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      1. Well, to be honest, It came from a book that is written by a poor man who lives in Canada and dedicated his life to bring peace in the world and especially the bullying against autistic people (geeks are often bullied …).

        The original site of him is gone, but I copied the book (I took the table from the appendix of the book, http://oi60.tinypic.com/348rds7.jpg, http://oi62.tinypic.com/35ib14i.jpg )

        I put the book online, but the titles of the chapters are hard to distinguish from the original text:
        http://youmaybeinsane.webstarts.com/index.html?r=20130228130918

        I hope you learn something valuable of the book. Good luck nurturing your autistic children 🙂

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        1. I would suggest you to copy the information and put it in a word document so you can read it easier, without being distracted by the background 😉

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        2. Thank you 🙂

          By Googling the title and author’s name I’ve found that the book is available for sale as a hard copy and an ebook from a few places (Lulu, Barnes & Noble, Amazon and iTunes) and also for FREE. So I downloaded the free PDF version from Lulu.com

          It certainly looks like an interesting read …thanks for letting me know about it. 😀

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  25. What do you think about the book? I’m from belgium so my english is not perfect, that’s why I have difficulties in reading some parts of the book.

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  26. Hi, I have a big problem.

    My child is on the gluten/casein free diet but he’s a vegetarian (he want to eat vegetarian since he was 11 year old). The veggie meat he eats is mainly soy, and recently I’ve read that soy can also be a problem and similar opioid like effects as gluten/casein. What do you think? is soy a problem or not? Because I really don’t know what else he could eat if soy also needs to be eliminated.
    Thank you.

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    1. Hi, soy can be a problem for some people. One way to find out if soy affects your child is to carefully remove all traces of soy from his diet for a couple of weeks (or longer perhaps?) to see if there is any change in his behaviour or in how he feels in general – emotional/physical/digestion etc. Then reintroduce soy to his diet to see if that causes any changes. If no changes are observed when soy is removed or reintroduced then it’s probably not an issue for him. However, I would still be careful to include as much variety in his diet as possible and not go overboard on the soy products as too much of anything can be bad for you. Here is a good article about the pros and cons of consuming soy: Is Soy Bad For You, or Good? The Shocking Truth

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  27. Thank you so much everyone for sharing. This has been very useful information and has helped arm with with a shopping list. My ASD and ADHD boy has been excluded from school and recently I have been pushed out to home school. I’m currently pushing back at school but unfortunately his temper hasn’t improved. I’ve started a probotic after doing some research to find yes he has a leaky gut and what do you know a week on it my son’s bowel movements have reduced from Elephant size to more normal and way more regular. Now I am about to embark on the GFCF diet recommended by my Paed. I am extremely worried as my son lives on a very limited diet as it is. He hates fruit and vegetables and can sniff out food that contains it a mile off. I am starting this whole journey will so much more knowledge now after reading this detailed blog. Thank you so much!!!!

    Adelle
    Australia

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  28. Hi
    Thanks for all the great, practical advice. My 5 year old has suffered abdominal pain and problems going to the toilet since we toilet trained her. I started her on the gfcf diet two weeks ago and while the stomach pains have not gone the change in her behaviour has been remarkable. Our “difficult & moody” child has become a happy, loving, talkative girl. She would frequently hit her younger sister as well as me and she has not done this once since we started on the diet. Instead we get kisses and hugs. She is now interested in things other than the TV and the iPad and is asking to see friends. It’s been quite a revelation. Her sister is displaying some delays and aggression. She’s also on the diet and we have not seen such dramatic improvements we will continue on with it.
    My concern now is whether they are getting a balanced diet in terms of correct levels of vitamins as they are both fussy eaters..I wanted to find a paediatric nutritionist based in Sydney who is a believer and could support us on this journey, helping us get tested and providing advice. Is there anyone you could recommend?
    Thanks Beth

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