World Encephalitis Day 2019 - My Story

Gluten drove me to madness, almost killed me, put me in the psych ward five times and lost me 6 years of my life. A sobering warning about non-coeliac gluten sensitivity.

Also available as a shareable Facebook post.

As it’s World Encephalitis Day I would like to share my story with you, in the hope in inspires other to keep looking for answers and never lose hope.

I’d never been quite like my siblings. I cut a clumsy and awkward figure compared to their athletic and confident demeanour. Chubby, unfit, unsteady and feeble were all monikers used to describe me by childhood gym teachers, classmates and the like, all frustrated at my total inability to muck in on the sports field. But behind this ungainly child lay a yet unknown medical condition, one that was causing me to not only frequently trip over my own feet and bump into things, but also cause me frequent headaches and most worrying, a memory loss and cognitive impairment that led me to fail all my high school exams. But somehow, despite all this, I gained a place at university and I graduated before moving into a career in security consulting at a prestigious global firm, a career choice that let me hide the awkwardness that plagued me as a child as it’s difficult to spot ataxia in someone when hiding behind a computer screen or boardroom table. For that’s what I had, ataxia, a then unknown condition where my own immune system was slowly attacking the cerebellum deep in my brain.

Perhaps if this had been my only symptom, I could have continued leading an ordinary yet clumsy life, although it’s now known that this degenerative condition would likely have led to increasing balance and movement problems, and even loss of sensation in my limbs. But it wasn’t to be for something much more devastating lay in store for me.

It was in 2011, when the ‘gluten free’ fad was all the rage that I became severely unwell. It started out with a visit to my GP as I’d been suffering with a bloated abdomen and following a blood test and gastroscopy that ruled out coeliac disease, I was referred to a nutritionist to try to figure out what was making me so gassy. She suspected lactose or fructan intolerance and we were working through a process of elimination to find the culprit. Lactose was ruled out, as were fructose a polyols. Now I was on the zero fructan phase which meant no wheat, grains, onions, nuts and a bunch of other stuff and I felt pretty good, with more energy and fewer headaches, and certainly less gas! I was told I was therefore fructan intolerant and to limit the amount of these foods I ate. So that’s what I did, switching to a mostly gluten free diet high in sugar and processed food but not eating onions and beans, which looking back was a stupid and unhealthy diet. This is important, because what I’d just done is go for a period without eating gluten and then start to eat it again in small amounts, something that can be completely devastating for someone who is gluten sensitive, as I was about to find out in the most horrific way.

On changing my diet to this mostly gluten free way of eating, my family quickly noticed a change, I would become irritable and have severe intractable headaches and vomiting, then I would become depressed, before my mood would lift and I’d be full of energy, before the cycle of irritability, headaches and depression started again. I carried on like this for three months, with these occasional exposures to small amounts of gluten in foods like my breakfast sausages, or even just microscopic cross-contamination causing these symptoms. But in June 2011 I went on holiday to France with my wife on son, and like all holiday makers looking for every opportunity for pleasure, my diet went out the window. I stuffed myself with bread, pizza, cake and anything I felt like for a week. I didn’t know it but I’d just started a catastrophic chain reaction in my body that would rob me of the next six years of my life.

Two weeks after returning to the UK, while sat at my desk, I suffered a massive, rapid and devastating onset of mental health symptoms. Antibodies to gluten had caused severe neuroinflammation in my brain and I’d developed autoimmune encephalitis, otherwise known as gluten psychosis.

In just a matter of seconds I went from a rational, sane person to complete madness. My colleagues had no idea what had happened. My memory of this is quite dim but I recall a few events, such as sitting in a video conference room with my project team and client and laughing uncontrollably with everyone staring at me. I remember siting in the staff canteen unable to shut out the roaring noise in my head. I remember being unable to read the words on my computer screen, or make out what people were saying to me, and I remember sitting in my car for four hours before driving the length of the south coast of England in the belief I had to find something my son had lost. I was also starting to hear voices and see things that weren’t there. I had become severely psychotic, confused, irrational, manic and lost the ability to speak coherently and articulate what was happening. I eventually made it home and my wife immediately got me referred to a psychiatrist, ironically by the same doctor who had just a few months earlier had ruled out coeliac disease. I was admitted to a psychiatric hospital and prescribed antipsychotics. I was given the rather unhelpful label of bipolar type 1 and paranoid psychosis, but this failed to adequately describe my symptoms. It took 4 weeks for the medication to start to bring my symptoms under control before I was allowed home.

But after discharge from hospital my problems had only just begun and new symptoms presented themselves, by far the worst being amnesia; I couldn’t form any new memories - the hallmark of encephalitis I am told. This was dismissed as a side effect of the two antipsychotics, lithium, valproate, benzodiazepines and sedatives I was taking every day, but it was nothing to do with the meds, it was the diseases and the result is that today all I have are photos to tell me of what I missed of those years, which include the first 6 years of my son’s life. I don’t remember his birthdays, his first day at school, taking him to the park and museums, playing with him and so many of the little joys that fatherhood brings. I’ll never get those memories back.

But other memories I am glad to have lost. Over the next 6 years after my symptoms first developed, I became obese, weighing around 20 stone. I developed hepatitis, my thyroid failed completely, I had an untreatable skin rash, symptoms of arthritis and my heart rate rocketed to 120bpm at rest due to an undetected thyroid problem which eventually led to my thyroid being destroyed. My blood pressure was dangerously high, and my arteries constricted, and I had a suspect TIA and pulmonary embolism and was rushed to hospital twice. I had a total of seven major psychotic episodes, five of which required emergency admission to a psychiatric facility. My balance also suffered greatly, and I was unable to climb in and out of the shower or stand on a chair to change a lightbulb. Even pulling on trousers become impossible without first sitting on the floor. Skills I once had, such as being able to write computer code, play the piano, and even just read a book were lost. I also lost numerous jobs and eventually went on long-term disability, accepting I would never work again. The effect it had on my family life was devastating, as my wife found she not only had to care for me, but also cope with living with a man very different to the one she had married. To make it worse, as my income was all we had to live on switching to benefits hit us hard. However, despite all these myriad symptoms my psychiatrist insisted on ‘one symptom, one treatment’ and stuck to handing out medication like candy, which sadly was mostly ineffective. It was eventually suggested that I was showing signs of schizoaffective disorder and that I needed electro shock therapy (ECT). It was by this point I was staring death in the face, if not by suicide, then by my rapidly failing body finally giving up so ECT seemed like a good option.

However, on the advice of my family I refused the ECT but I still desperately needed help, but I was discharged by the doctor who had been treating me when I ran out of money and could no longer pay my health insurance. I was referred to the NHS for further treatment, but quickly learned that the NHS, in my region at least, is woefully unable to care for people like me.

So I found myself in limbo and I was forced to do something both dangerous, but also positive and life-changing. I took control of my own health care and stopped taking all my meds. With hindsight this was the best decision I ever made, but one not without considerable risk, as once I was off the drugs my brain started to function a little better, and it didn’t take long for me to read through my medical notes and piece together what everyone had missed, that my symptoms correlated exactly with when my diet changed.

That’s when I looked into the autoimmune protocol (AIP) on a Facebook group for people with thyroid disease. AIP is a diet invented by Dr Datis Kharrazian, a clinical professor who specialises in treating neurological conditions through diet and lifestyle. The diet eliminates all possible exposure to gluten as it removes ‘gluten free’ foods that are safe for people with coeliac disease but contain microscopic traces of gluten at levels below 12 parts per million. It also removes dairy and other ‘inflammatory’ foods that he believes may be attributable to numerous autoimmune diseases. This removal of gluten free processed food is perhaps the single most important aspect of my recovery, as ‘gluten free’ is a lie, as these processed factory foods made for people with coeliac disease sometimes contain gluten and make me very unwell.

Ten days after starting the diet my psychosis ended and my memory started to function again. A month later I had the last headache I would ever experience and over the following year I would lose 7 stone (70lb / 40kg) and put every one of my now 120 symptoms into permanent remission.

It’s now been two years since I made my recovery, and I am in the best health of my life. I have had some breakthrough symptoms, due to being exposed to gluten when travelling in 2018 and also over last Christmas. These miniscule trace amounts caused me to develop some psychotic symptoms, but they passed quickly and I fully recovered. I follow AIP every day, it’s a daily commitment, yet it’s the only way I can maintain my good health, a good health that has allowed me to return to a normal life, to get a good job and stable income, to reverse life-threatening conditions and become the father my son deserves. Above all it has given me hope that I can have a happy future.

Of course, there is sadness. Encephalitis is a devastating illness, not just for those suffering from it, but for those who have to care for them. Losing my memory for almost six years is devastating too; some say it’s a blessing to not remember to horror of what I went through, but I can’t remember my son growing up. it’s like those years were a hazy bad dream. Someone recently told me I’d have been better off spending 6 years in prison. I’m inclined to agree.

I am now under the care of Professor Marios Hadjivassiliou, a neurologist who specialises in gluten induced brain damage. He tells me my prognosis is very good.

I’ve often asked myself could I have figured this out on my own at the start, pieced it together and realised that the diet I had followed in 2011 was the catalyst for my illness, that if the doctors had just left me alone and not forced me into hospital and given me all those drugs that perhaps I could have figured this out years ago. The truth is that the one thing I needed to piece it all together, by brain, was just too unwell. And if the best doctors, caring, diligent and fallible, couldn’t identify that gluten was the cause, then there’s no reason to believe I could do any better. In the end it was luck, my adoption of a diet to help my thyroid, that saved me, but it has given me a new chance at life, a truly rare gift, and I am seizing that gift and living life to its fullest, every day.