I started the GFCF diet myself and I have been quite happy with the results so far. I've taken care to list all the changes I've noticed since starting the diet, which are below.
Day 0 (May 7th) - I remove casein and gluten from my diet
Day 2 - I feel unhappy and wonder if it's because of a reduction in the opiod effect
Day 3 - I go shopping and instead of moodily throwing things haphazardly into my trolley like I usually do, I find myself putting my shopping in the trolley neatly.
Also I find that riding my bike at work comes more naturally to me.
I generally feel more alert.
I find it easier to talk to people on my postman round, and I notice from their facial expressions that they think I'm less weird than before.
Day 4 - I have a minor revelation that the way I feel is the way I'll come across to people. E.g. if I feel like a berk riding my bike then I'll look like one.
Day 7 - I see an advert on TV for a phone; I've seen this particular ad dozens of times before. This time I watch it however, I notice the man's face and facial expressions more. My opinion of him changes, I now thinks he's a bit of a berk. It genuinely shocks me.
Day 8 - I wake up and for a few minutes everything seems to be better detail. I look in the mirror and I notice more details on my face. It's like life in High Definition.Then either I get used to the effect or it wears off.
Day 10 - I feel my aching back more keenly and I wonder if it's because of a reduction in the pain-killing effect of opiods.
I find I'm more aware of my facial expression, and what people would make of it.
I have a weird experience on the driveway as I'm getting out of my car. I hear a group of children laughing somewhere, and my brain selectively switches between them. Then my focus switches to the sound of adults chatting, then birdsong, The experience is new and a little overwhelming.
In hindsight, it sounds like I was noticing an improvement in my central coherence of hearing. Here's a quote from 'loving Mr. Spock' on the matter.
'Aspergers have weak central coherence. All the bits of things that are happening all the time come at them in the same form, at the same speed, at the same level of importance. Birdsong, a television blaring, drinking a glass of wine, someone on the phone, all that goes on our lives simultaneously. We tune out what's not important'.
I find I'm sleeping better.
Day 16 - I'm feeling tired so I have a cup of coffee. I've never experienced a stimulating effect from drinking coffee and I don't notice one now. However, when I speak to someone on the phone I find I'm talking faster, more often and I'm more likely to interrupt. It reminds me of how I was on mephedrone. For the first time in my life, I notice a stimulatory effect from caffeine.
I notice that I slouch a lot, and try to correct this.
Day 19 - I generally feel more alert and aware, and I'm reminded of my experience with the stimulatory drug mephedrone. It seems I get more aware the less I generally eat - perhaps this is because of candida releasing opiods every time I eat.
Day 21 - I find television more entertaining than usual.
During the night I experience a craving for milk. Sipping water reminds me of the taste of milk, to the extent that it actually tastes like milk. I can't sleep, feel slightly sick, have a slight pounding headache, a dry mouth, and a slight cough. Perhaps these were casein withdrawal symptoms? If so, they were very acute, since they lasted no more than a few hours. And they occured rather suddenly 3 weeks after I'd given up milk.
Day 22 - The next day I don't feel ill anymore.
Day 25 - I have a conversation with my brother on the phone, and he tells me about his exams and revision. Usually I'd be bored and suffer through it, saying non-specific phrases every now and then like 'oh yeah?' and 'that's crazy'. This time however I find I'm genuinely interested in what he's saying. I ask questions to find out more.
Day 30 - I accidently consume milk. It was in a pudding I have during a meal out with my family, specifically a 'gluten-free crumble'. The mistake was made because I'd accounted for the gluten but not the casein.
Day 31 - When I wake up I feel like I'm on an opiod. Less alert and aware.
I regress back to some pre-diet behaviours. E.g. picking my lips, looking in the mirror every time I pass it (I have a theory that I do this to remind myself I'm actually real!!), singing and talking to myself. This are known are stimming behaviours (which is short for 'self-stimulation'), which aspies commonly do.
My driving is noticeably worse, despite trying to concentrate on the road. It's erractic and slightly dangerous.
I feel less willing to use the phone than usual.
I experience a loss of appetite (or more specifically, i stop noticing when I'm hungry).
I can't sleep at all. I get zero sleep that night.
Day 32 - I feel depressed and hopeless, perhaps more so than I ever have in my life. I am sure no-one believes that I'm aspergic, and I'm tired of getting no help or sympathy.
Day 33 - over the course of an hour during my postman round I sense my current mind-fog lifting,
and I feel hopeful again. It seems that the casein I ingested 3 days ago has left my body.
Day 36 - My spatial awareness gets better. The experience is completely new. I notice the paralax scrolling effect (between 2 or more objects) more often and without effort. My innate sense of depth gets better. When I watch TV I imagine the objects in 3D rather than watching a 2-dimensional image.
I'm able to distinguish between people and backgrounds with a lot less effort. Don't get me wrong, I've always had perfect eyesight. I don't mean that people appear blurred to me. What I mean is, I can focus my attention on people, instead of having my attention divided between everything. This is an improvement of central coherence of sight.
I find my breathing is slightly deeper and more frequent (opiods supress breathing).
Day 39 - I'm driving in my car with my brother. I notice that I'm driving a lot more smoothly and safely, without it requiring any extra concious effort. My brother agrees that my driving is a lot better and says 'I didn't even notice your driving'.
I think I notice the bags under my eyes lessening, and the same with the spots that have always been on the sides of my face.
Day 45 - I might be able to see in the dark better. I went out to the garden at night to collect my washing and I didn't need to turn the garden light on. However this way the longest day of the year, and I can't rememeber for sure what time I went out.
I am also noticing the difference between shadows and light more.
Day 46 - I get urine test results back from Sunderland University.
They are:
no casein peptides were found - as expected as i gave up casein 6 weeks ago. it's said to leave the system 10-14 days after removing it from the diet (even though for me it may have taken 21 days?)
gluten peptides were found - though in trace amounts
IAG is present but not as the largest peak in its area, so its in a low amount
however this result can low if you've been on the GFCF diet for a few months. Also, taking essential fatty acids interferes in some way - but I don't know if it makes the result lower or higher.
(IAG is not from the diet like gluten or casein. It's an indicator, it's usually in large amounts with autistics.)
So in all, the results seem to show I don't have autism.
Day 52 - While watching the film Hidden I was working out what the characters felt and thought, and what they knew, and what their motives were. I saw them as people like myself.
Day 55 - I have a dream where I'm under the influence of the opiod peptides. People give me funny stares while I try to look normal and hide the despair on my face.
Day 59 - My attitude towards goals in life has changed. Before, I would sneer at people with life goals, imagining that they're working so hard to achieve them that they don't enjoy life. I prefered a more pessimistic outlook. Now I want life goals, so I have something to work towards.
Day 60 - When walking down the street I get greater awareness over my body. I make the connection that my body is the same as other people's bodies, even though I view mine from the front my the point of view of my head. It just hit me.
Day 62 - I went to Sandbanks, and I was looking across the entrance to Poole bay. I was impressed by the view, particularly because as I got there 4-5 large boats happened to be coming into the bay, which added to the sight. The reason I'm mentioning this is because I noticed the sense of scale more than I usually do. I've wondered if if I ever went to the Grand Canyon, would I be in awe of it like you're supposed to be? I don't think I would. It seems autism diminishes your sense of scale, which for me is now improving.
After visiting Sandbanks I had a craving for chips, and because I was feeling happy I decided to get some. I avoided buying battered fish because I knew the batter would be made of flour, so I had a non-battered sausage and chips. At home I began to suspect they may have gluten in them, so I checked the internet for information but people were only talking about chip shops that provided gluten free fish and chips. In the end I threw both the chips and the sausage away - the sausage because it may contain flour as a binder (I have avoided sausages in the past for this reason) and the chips because they would have been fried in the same oil as the battered fish, and therefore they'll be contaminated with gluten. Soaked in it, even.
Day 62 - At Castlepoint I look at huge tesco and asda signs and ... it's odd. I'd like to say I was impressed by the sense of scale again (see day 61) but I wasn't. More like, I could at least appreciate how large they were. Autism is like viewing the world in 2D whereas a normal person sees it in 3D and is therefore good at sports and not clumsy.
Day 63 - The stool test results came back. I don't have candida or any other pathogens (though I may have an imbalance of the intestinal bacterial flora - not enough acidopholus and too many alkaline-creating bacteria - hence a high ph) .
I do however have a leaky gut.
I have a alpha-1-antitrypsine level of 56.8 when it should be no more than 40. The protein is made in the liver and gets lost in to the gut because of leaky gut syndrome. Some guy in germany has a level of 76.8. Cant find much more information about the protein and its connection to leaky gut on the internet. Perhaps it's enough that I now know I have leaky gut syndrome.
My secretory IgA is 174 when it should be 510-2040. This indicates a diminished activity of the mucosa on the inside of the digestive tract. "Secretory IgA is indicative of something called the mucosal immune system is usually low in children with Autism."
Day 64 - I had a craving for ciabatta bread and bread rolls, either with oil or butter. This was the 2nd craving for bread I've had since starting the GFCF diet. I looked in the bread bin just so I could see bread (there wasn't any in the bread bin though).
Day 65 - I realise that neither of my nostrils are blocked up - usually one of them is.
Day 70 - I think I ate gluten the day before. I was snacking on a packet of HP salted peanuts, and I kept going back for more. At first I thought it was because I was hungry - I hadn't been eating much lately, and I'd been losing weight. Then I noticed I was feeling bloated, so I weighed myself, and I was 2 pounds over my normal weight. How could I be hungry and 2 pounds over my normal weight? The ingredients of the peanuts were just salt, oil, and the peanuts themselves, so it was all GFCF-legal. Then I happened to read on the packet that it 'may contain gluten'. Usually I don't pay attention to these warnings - I believe that any risk of contamination with gluten in the factory is negligible. I stopped eating them anyway. Later I was looking online for Sara's diet, and ended up reading about a parent's experiences with the GFCF diet instead. They said that regressions can be caused by a dose of gluten as low as a 1/5th of a gram. (Interestingly they also said it takes 24hours for the full regression behaviour to occur). So I threw away the packet of peanuts because they only needed to contain a very small amount of gluten for me to be getting a dopamine effect from them. I have to be careful to read packets from now on.
Day 75 - I find photographs more fasinating. I can imagine I'm there. It's like my mind is looking at the details e.g. face expressions, rather than the shapes the picture makes. And I recognise the face expression and other things in things ive seen in life.
Also I saw the toy story 3 logo, and I actually found the logo font fun. My mind was looking over it. It actually enjoyed looking at it.
Day 80 - I ate milk and yogurt, which were in a curry mom had prepared for me. Before I ate it I went into the bin and found the jar - it was for pasta sauce and there were no ingredients for gluten or casein. Great, I thought. So I ate it all. As I was eating I linked together the fact that I was eating a curry, and the fact that the jar I'd looked at was for pasta sauce instead. So I looked through the bin again and I found a empty jar of curry sauce, and one of the ingredients was yogurt, which made up 8% of the sauce. I took 80 digestive tablets.
i came up with rules which basically are
1) read packets
2) only eat my own food
3) don't eat out
Day 81 - slept ok the night before, although it took me half an hour to get to sleep rather than the 10 minutes it has been taking the past couple of nights.
i was able to drive a car ok.
My sense of time is diminished. 6 hours have passed since I got up from bed and it feels like I got up 10 minutes ago. I haven't done much today. Stayed in the house. I worked on a poster project for 2 hours whereas before it would have taken me a lot less time. I think when it gets to time to go to bed, I might be amazed at how quickly the day has gone. My theory is that time goes slowly when you're bored or your brain has to work hard. If you're under the influence of dopamine then your brain is neither.
I dont care about things as much.
I didn't want to talk to mom and dad about the overdraft fees as much and when she asked me a question I said 'i don't know'. i'm not as eager to go out and do things.
i found myself stimming by rubbing the sore patch under my ear, and rubbing my fingers over my eyebrows. Ive just realised that dad stims, it's what adam and lisa shout at him about. atm he is rubbing the tip of his nose.
this regression doesn't seem as bad as the other one, but here i did take 80 digestive enzymes.
i find i have to focus hard on just one thing to follow it. this has the effect of blocking of other things. this is the reason for the autistic hyperfocus
signs of a regression at the moment include:
being overwhelmed by all the clutter in my room. Yesterday I was fine about it. Today it feels visually overwhelming - perhaps because I can't determine which clutter is important to what I'm currently doing, and which is not. (central coherence of sight?).
being fascinated by a small feather stuck to my window, blowing in the wind.
possible blocked up nostril (left nostril) forming
feeling tired even though I had a relatively good night's sleep last night.
I have noticed that my dry skin on my elbows has all but gone. This reminds me of Danny's eczema, which died down when he ate less gluten and dairy.
Week 13 - bought new trainers from JD Sports. It was very busy in there. But I didn't feel anxiety, at all. This was amazing for me, as I would otherwise certainly have felt anxious is such a busy environment.
The songs that are always stuck in my head have stopped. This must be because, my greater awareness of my environment is occupying my mind.
Week 15 - Played Heavy Rain which is basically an interactive film. For a few minutes after, life felt like the game. Like I could make decisions and there were mini-challenges. Normally I must just suffer through life. And it's like I'm on a script or something. I don't feel in control.
September 2010 (4 months in)
i was looking at recent photos of me on holiday in florida. I looked like an idiot, and i realised that I always tell jokes and annoy people and don't take things seriously. This must have been me using humour as a protective mechanism, because of the undiagnosed aspergers. I often found things funny and ironic when others didn't, and the irony of situations i was in gave me bravery due to something like madness. Well anyway, when my dad picked me up I didn't feel like the situation was intrinsically funny. I didn't smile for no apparent reason and I didn't make stupid jokes, all the time. My brother had said to me how I try to make a joke of everything.
At one pont I was sure the gluten had finally gone. Everything felt and looked completely clear. But it seems this clearness comes and goes now. When I exercise, e.g. walk round delivering leaflets, I think gluten is released with stored fat and I feel spaced out again.
Also when I'm being social I can only last so long before I feel slightly spaced out.
I was preparing food in the kitchen at home in Birmingham. It's a very small kitchen, and it so happened that 3 other members of my family were in it at the same time preparing drinks and food and whatnot. I think I coped a lot better than I usually do. I was better able to anticipate what people were going to do next. Usually I would make someone annoyed at me, for being in their way. Instead I was helping people e.g. handing them utensils.
my stools have been much more regular - about once a day - and have been of a healthy colour and consitency. I have been surprised at the amount every day. Ok, that's enough talking about stools.
While driving, I knew there would be a speed camera ahead of me, so I looked out for it. In the far distance I could see a blob of bright yellow, the same colour of a camera. I followed this yellow blob, and as I got closer to it, it was indeed the speed camera. I havent been able to follow things over a distance like that before. It reminded me of lord the rings, when legolas the elf can see the tower of mordor as a tiny speck of red in the distance.
People are more comfortable around me and are more open in their body language.
Ive found i dont need to squint in daylight anymore. I will squint out of habit, but when I realise I am squinting I can stop without becoming blinded.
At film junkies I got the impression that people thought I was more normal. There were a couple of new people and they didn't seem to notice much that was strange about me.
I haven't had any moments recently where I've talked too quietly (or too loudly). People haven't had to ask me to repeat myself because of speaking too quietly.
When leaving the house, I looked at the gravel and was surprised at the detail of it I noticed
I notice detail on faces more. I was talking to a postman today, who up til now I thought was quite young, perhaps early 30's, but actually his face has quite a lot of lines in it and he may be in his 40s.
I have been eating oat muesli for 3 days. On the packet it says 'gluten-free' and that care has been taken to prevent cross-contamination with gluten crops such as wheat. Up til now I have believed that oats don't contain gluten, and the reason they are banned on the gfcf diet is the oats get contaminated with gluten crops during farming & harvesting. Well I did some googling just now, and have discovered that while oats are indeed gluten free, they contain a protein similar to gluten (the same situation as soy). So while oats are fine for some cealiacs, oats must be avoided on the gfcf diet. I began doubting oats when I noticed several signs of regression, which were:
more mucus in my nose (up til now it has been clear) requring me to blow it
a craving for the muesli
songs get stuck in my head more often
I can't help keep noticing my nose, the way is looks see-through from my point of view. I remember this happening a lot when i was younger. I also like to play with this effect by crossing my eyes and looking at objects e.g. hands, and watch how they duplicate and blur, the 2 duplications become see-through and move away from each other. I think that external stimuli is normally enough to keep people occupied
waking earlier
avoiding socialising. Flatmates annoy me with things that didn't before, e.g. talking, laughing, basically anything really except for being very quiet and staying in their rooms.
less interest in things / harder to think. Forgetfulness and absentmindedness.
finding things to escape into e.g. a magazine about video games, a video game manual
constipation, for the first time in weeks. Also, I had a meal yesterday with a lot of rice in it. Shortly afterward, it felt bad to move and I found it best to lie down until the feeling had passed. Up til now, rice hasn't been a problem for me. It's supposedly a food that's hard to digest. It seems gluten itself may decrease the effectiveness of digestion.
my bed and covers feeling softer
the anxiety is coming back. i was in my bedroom, and i couldn't help hearing pots and pans being moved about in kitchen (a case of indiscriminate hearing?). I realised I was avoiding going downstairs until I thought I'd be able to go without bumping into anyone. This gave me anxiety
the return of feelings of self-hatred
my sense of taking nothing seriously is returning. I feel like everything is ironic, pointless and funny. If unrestrained I would probably laugh out loud like the joker and spend the day giggling to myself
So lesson learnt - don't eat oats.
I gained more awareness of my body movements, much like how I suddently gained more awareness of my facial expressions. No doubt it will help in posture, reducing clumsiness, being social with body movements, and swinging my arms in sync with my legs when walking.
I can go longer without a song playing in my head. Ive realised that songs in my head are a form of stimming. They are predictable and add predictability to my life. They are also invisible, unlike any other form of stimming, so its superior in that it goes unnoticed. However it does get annoying.
24 Sep 2010, 2:40 pm
I was particularly struck by what you said about things being more 3D on a GFCF diet; that has also been my experience. 
Just noticed that I have already posted about that on this thread! :lol )
There are lots of detailed observations about the small but significant changes which can occur on a gfcf diet. I recognise quite a few of them, some of which I had forgotten. Thank you very much for posting your experience. It's reminded me of the feeling of "waking up" which I had, like from a dream/virtual reality, a state in which the world was all inside my head, and the wonder and relief of finding that it was outside, that I was in the world. 
)
