Personal Experiences with the GFCF Diet

26/08/2008 — 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 3^rd 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/caseinHere is another list of ingredients to avoid on the GFCF diet… mindd.org/s/archives.php/72-page.htmlAutism SA has a good list of references regarding the GFCF diet at… www.autismsa.org.au/html/strategies/therapies/glutenfree.htmlThis 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 – Autism – has 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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