(Update : there is mast cell involvement as a cause for all of this something that I did not know yet when I wrote this. See post “There is mast cell involvement” )
When I fell ill, it actually happened quite quickly, and yet it had been building up to that point all my life. I will describe all my symptoms later in the future because they are so many and highly interesting. It took me a long time to understand it all. Literally years to figure it out in detail. At first I thought it had all been building up for a couple of years at least as a chronic illness that I was simply unaware of at the time. Looking back the beginning symptoms of it were already there.
But after a while I was thinking “No I have had this for even much longer than a few years” and I could somehow pinpoint it to a certain period in my life after which I started to have all kind of weird symptoms and my life changed for the worse. Researching my medical files later this turned out to be 15+ years before I fell ill. And I had a whole bad year back then, several times ill with 3 separate antibiotic courses. And yes indeed if that is what you are already thinking : those rotten antibiotics…. they did it for me and maybe coupled with a bad case of pneumonia on top of it, a temporarily weakened state. Looking back, after that, my life would not be the same anymore, something had changed. But what was the exact cause of my illness then ? Something had happened. But what ? So I still did not know.
However, after some more longer pondering about it all I came to an even stranger conclusion : that I have had this same problem even longer, I have had it actually all my life ! I just didn’t know any better but some of the symptoms were there, and I could now recognize them how it was in the past and when I was young. They were just very minor then and I just lived with them. How could I ever have known that it would all end up in such a serious and life-wrecking illness ? At a certain moment everything suddenly clicked into place and I knew what the cause of my illness was…
It is all a gut problem. And my digestive tract has literally ruled my life without me knowing.
Everything follows the digestive tract symptoms / problems, from just some minor sensitivities when I was young but perfectly livable with and now all kinds of strong problems in that area. And I have proof for myself too : I can literally make my illness worse or better at will in very short time in relationship to my digestive tract and influencing it or trying to treat it, and I have made quite some progress since I started doing that and I have managed to make my illness quite a bit less, but it is a very difficult thing to totally get rid of it seems.
I won’t go into it here how it happened but I found out that my body produces acetaldehyde itself. One of the clues that I had which led me to make that discovery was that my skin turned completely red from head to toe, like a red firetruck / lobster. Permanently. Also a bright red face with sometimes flushing on top of that. It is the acetaldehyde that makes you flush red. But the constant higher background levels of acetaldehyde also seem to turn you into a physical wreck where nothing works properly anymore it seems, in the strangest ways possible.
I went to a toxicology lab and had my blood tested twice, the first time it showed that I was walking around with approximately 10 times the normal acetaldehyde blood level that a normal person is allowed to have. I decided to test myself again after I had managed to make myself less ill somewhat and this time it was considerably less but still 2-3 times higher than normal. So I have even proof that my endogenous acetaldehyde levels are much higher than normal.
It is either a biological organism, a biological mechanism or a combination of both that produces the endogenous acetaldehyde. Seen how my illness progressed coupled with the symptoms of my gut I think that the most likely cause is that of an organism that overgrows in the (upper) digestive tract. I do not know for certain what this organism is, and whether it is Candida, some other sort of fungus / yeast, a bacteria, an undiscovered strange two-headed virus or whatever that produces the acetaldehyde. I just know it is probably “something like that” and I leave it at that for the moment.
One of the things that also helped me to find out how my illness worked was the way it influenced my brain. For a long while my focus was more on my many strong physical complaints, all I knew was that I was very ill, it somehow seemed to make sense that my brain did the things it did and I was more concerned about my physical health at the time. If you have a bad case of the flu your brain also functions weird, right ? But general functioning was completely gone and I had developed all kind of weird neurological complaints, motor skills problems, speech problems, general mental health problems and much more very interesting symptoms too much too describe right now.
And just like my physical complaints, it was just… more. More of the same. I have always had it unknown to me in my life. And how strange, it was because of my illness that I found out that I was a bit “in the spectrum” which is a better way to describe me than “being Autistic”. But when I was young I was indeed one of these technically minded “planes, trains and automobiles” kind of a kid with some more small not very problematic traits, just a bit in the spectrum, it seems to all make so much sense now to me looking back. And I now know that there are loads of people out there who are a bit “in the spectrum / influenced” just like me. Because these are indeed truly spectrum conditions. And seen like that, I don’t mind being me at all, it can have a lot of benefits too and can make you quite the capable person in some ways. No, it is more the illness that is the problem with me. Not that there is any shame in it if I or someone else would be really strongly autistic, that is just the way it is, but I am telling you this to try to make you understand what is really going on here. Also one should not call an apple a pear, because I am an extremely mild case in its base. You don’t really notice it with me.
Except that…. I have fallen completely into autism since I got ill.
I have developed all of those characteristics, traits and the way autistic people are. What was there but not much of a problem has now become a big problem. And I have even developed things that I never had… I remember a documentary about one person with obvious autism in particular, I literally had become like him… It was as if I was looking at myself in some way. I recognized everything. The obsessive interests / hobby’s, the manner of speaking and expressing himself, the anger and frustration about the problems in life, being overwhelmed by things happening unusual and the sensitivity for sounds and noise, the tendency of wanting to withdraw into his own world, the different way of thinking and looking at the world, and so, so much more. All those typical autistic traits. And even stranger : I was literally showing those physical neurological signs originating from the brain some people with autism have, that weird way of walking and moving and a little bit of clumsiness, the way he acted, even a strange facial expression he had sometimes. But again : a lot of these things I never had, or never so severe, I developed it during my illness.
And I understood how it happened and what I was looking at : they all simply have had more of this whole phenomena than me when they were a baby / very young child and this had “set” itself permanently. For them, it became unchangeable a part of who they are. Now when I was very young I only had it a very little bit in a not very problematic way but for some reason I never stopped having it, and it lingered on throughout my life until it finally got completely out of hand as a real illness. But it is all the same basic mechanism at work, just at different points in life.
All the influence on my brain is completely linear with the severity of the other physical symptoms and the gut problems. They go completely together. Everything follows the digestive tract symptoms. The more gut problems, the more autistic I become. It conditioned me when I was a young child, it influenced me and transformed me into the way I am, it was always there with me. It makes me do and think and act in a certain way. And it is certain for me that this is caused by excess endogenous acetaldehyde, because I can recognize its properties now.
But how interestingly : I have managed to work my way out of it quite a bit too…. And if I can get my digestive tract influence under control I should be able to return to the more normal, not really problematic version of me.
Acetaldehyde seems to be an active substance that influences the brain in all kind of interesting ways I have noticed. It looks like it is a real “drug” with many interesting properties. But it is not a really nice drug if you have too much of it, and it is going to give many problems then.
Now this is how I believe it works when it comes to autism / sc (and maybe even some other developmental conditions / disorders / problems !) :
The baby develops a digestive tract problem / an overgrowth of some sort and more than usual endogenous acetaldehyde is produced and influences the brain. It probably happens quite soon some time after being born. This can all go completely unnoticed happening in the background and is in most cases a temporary state that passes. By the time they are diagnosed with autism you are looking at what happened in the past.
To understand it you can imagine that the acetaldehyde is a bit like a “hard drug” to a young baby, the acetaldehyde influence “sets” itself and becomes permanent. This can range from very mild so you become just a little bit different later in life to very problematic leading to even mentally impaired situations in extreme cases. The outcome will be very heterogeneous and quite unpredictable. All that depends just on when, how much and for how long there is more than usual endogenous acetaldehyde influence. And please remember, we are talking about baby’s here… very young children. A new life in the most important beginning stage of brain development. If something happens then, it will become permanent in its “wiring” of the brain.
However, in more rare cases if the child still has some acetaldehyde influence in their development when growing up, it can also influence them through conditioning / experiences in their life while being “under the influence”. This sets itself in yet another way possible. You develop differently.
Most of the people who are diagnosed with autism / sc are of course of the “set” variety, nothing can change that anymore, I am not claiming that at all don’t get me wrong, nor can they be “cured”. But if you have a young child still under the influence of acetaldehyde you could possibly see the strangest of behavior and problems if it is severe. Everything going on in that small unconditioned brain will be acted out directly. And there might be real physical problems too on top of that.
There was always a strong link between autism / sc and the digestive tract but they never figured it out. But I know how this works, I have been there all my life, I know all to well how my digestive tract influences my brain…
The digestive tract and microbiome research is always talking about the gut-brain connection but they have come up with absolutely nothing practical yet and a lot about it is over-hyped or simply wrong. And they are not looking at what is the more important thing to research. To me, comparing it to my own illness and its strong symptoms, that whole research looks almost like a joke…. That what is really, really influencing a human being in its general functioning, they have truly no idea at all about it right now.
But I have done what they have not managed yet : I have discovered a way in which the digestive tract influences the brain and body and I have even proved it with blood tests. I found a clue to how this works and found something that can be tested to see whether it is abnormal. I discovered something very important. And it goes so much further with such a large possible impact in a lot of areas in medicine than I can describe here in a few words. I am also convinced that I am quite the universal human being in how my body works so I believe that there are many more people out there who have the same illness as me. And it does not necessarily have to do with autism / sc, you can develop this later in life just as an illness that gives you all kinds of problems in so many ways.
Very interestingly too I have developed all the same symptoms as people with ME / CFS have. The similarities are striking. And there has been talk about whether ME / CFS as an illness shares something with autism, but just happening at a later stage in life. Well that might actually be the case if it would have the same cause of too much endogenous acetaldehyde that is being produced.
I hope to give you some more info what it is all about and how it all works the coming time. And I also hope that it will lead to a solution to this problem of a yet unrecognized and misunderstood serious illness or influence that affects so many.