How psychiatry failed me and cost me 5 years of my life.

Last night I spent 3 hours reading my medical notes and I still only got about half the way through the 3 inch high pile of paper. These notes cover my period of severe and unexpected mental illness. It wasn't easy to relive what happened but it has proven to be very informative.

It appears I began to get unwell at least 6 months before I had my first severe episode and was admitted to hospital. My wife reported to the doctor that I showed signs of mental illness in Feb 2011 and my mother and grandmother concurred. This coincided exactly with when I stopped the FODMAP diet and underwent testing for celiac disease, which yielded a false negative, and then I began a small reintroduction of wheat, dairy and other inflammatory foods.

I went completely gluten free again in March in an attempt to reduce fructan intake, as I'd been told it caused my IBS. I also gave up onion and garlic and I did get a little better but never really recovered. Photos show that I certainly lost weight and looked really well. I was eating large amounts of everything else though, including dairy, soy, other grains and sugar.

In late June I went on holiday and ate a regular western diet for a week, including loads of bread and cake, and that's when things turned very serious. In July 2011 I became deeply depressed for a few days and then suffered a huge onset of manic symptoms and was admitted to a psychiatric hospital with bipolar mania and psychosis. What I've learned from my notes speaks volumes. Apparently at the time of my onset of mania I had a low grade fever, had intestinal problems, starting with diarrhoea and then severe constipation for which I was prescribed laxatives. In later days I had neurological problems with tingling in my hands, feet and lips. This is a sign of an autoimmune reaction starting in my gut - likely celiac, and it then led to gluten ataxia and gluten psychosis (a form of autoimmune encephalitis). The message here is gluten can clearly have very severe consequences far beyond just gut problems. I was also prescribed the anti depressant sertraline (Zoloft) prior to the onset of mania and it's well documented that anti depressants such as this can tip some people into mania without warning.

What followed was the administration of huge doses of antipsychotics and that was it for me - my doctor recorded the side effects of heavy sedation, confusion, lethargy, tremor, and a reduction in cognitive ability, including losing the ability to read. Later it would become clear that I also couldn't form new memories. Coupled with my now damaged brain I had no chance of figuring out what had happened. It is noted that I met the criteria to be compulsorily detained but I had enough insight to go to hospital voluntarily, so I was definitely very unwell. However I had no say in my treatment and if I'd refused I would have been sectioned and forcibly medicated.

What makes me very angry is that my gut issues and other physical symptoms were overlooked completely. They did at least test my thyroid and it was optimal. If my doctor had looked at my history he might have figured it out. I've recently been advised by a leading professor of immunopsychiatry that testing for anti neuronal antibodies was indicated but they never bothered to look for them at the time.

Worse is the thought that if they'd just left me alone I would have started to recover and then would have had the cognitive ability to piece it together myself and identify gluten as the trigger. Sadly it wasn't until late 2016 that I stopped the drugs and found my brain functioned really well without them and I could then work out what was wrong and start AIP.

I have spoken to a lawyer but there are no grounds to sue under UK law. It looks like my doctor is going to get away with it.

Psychiatric drugs can save lives and can be useful in the short term, but in my case they ruined it. They caused me great harm and I wish I'd just been left alone.

Today I'm well, really well. My life is on track and I'm happy, but I'm struggling to deal with what I've read in my medical notes. I'm angry and very sad and it's going to take time to accept this happened. I have little memory of the events of the past 6 years and I'm slowly realising just how much of my life is missing - I was 35 when I got sick and I turn 42 next week so that's almost one sixth of my life so far that has just gone. I'm having to piece it together from photographs.
There's a lesson here. Advocate for your own health because doctors, psychiatrists in particular, might do you far more harm than good. Ask a doctor for advice by all means but be aware that doctors make mistakes, and in some cases they can really screw up your life. My current psychiatrist refuses to investigate my illness and my medical records still have nothing about my reaction to gluten. I'm going to write to prof Hadjivassiliou who is an expert in gluten psychisis and ask to see him as I'm going to have to figure this out myself.

At least this is going to make my book all the more interesting!

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