My New Diagnosis - Gluten Encephalopathy

Yesterday, 13 Feb 2018, I had a consultation with Professor Hadjivassiliou. For those of you who aren’t familiar with his work he is the world-leading expert in the neurological effects of gluten and is behind the discovery that it’s possible to have an autoimmune reaction to the gliadin in gluten and not have celiac disease, a condition known as non-celiac gluten sensitivity (NCGS).

The Prof is a delightful man and we chatted for around an hour. He has formally diagnosed me with Gluten Encephalopathy, otherwise known as gluten psychosis, a severe brain disorder that manifests as mental illness due to eating gluten. Psychiatric illness is known to occur among people with celiac disease, however what is incredible in my case is that I don’t have celiac enteropathy but non-celiac gluten sensitivity and I am only the third person to have had this formally diagnosed in medical history, the first in the UK, and the first to have it present as bipolar disorder. The first case was a 14-year-old Italian girl who was the subject of a publication titled ‘Gluten Psychosis: Confirmation of a New Clinical Entity’. The second case was a 37-year-old American woman who was diagnosed by Professor Fasano who sadly relapsed and is again very sick. What is notable in my case is that I appear to have made a quicker and more complete recovery than both these cases by following the Autoimmune Protocol diet (AIP).

I asked the Prof some questions and what he told me is astonishing.

• He explained that exposure to gluten, or more specifically the gliadin protein in gluten, can trigger symptoms within hours if you have gut symptoms; or several days if you have NCGS without gastric symptoms. However, everyone is different, so no single rule can be applied.

• There are four categories of gluten sensitivity: gastrointestinal (including coeliac), peripheral neuropathy (pins and needles, fibromyalgia & pain, numbness etc.), ataxia (balance and coordination) and encephalopathy (everything brain). You can have just one of these and not the others.

• It only takes a tiny amount of gluten (as little as 1/300th of a slice of bread I believe) to trigger a reaction. People with a neurological or psychiatric reaction are far more sensitive than those with celiac disease and can’t even tolerate ‘gluten free’ food with less than 12ppm gluten content. This may explain why some people still feel unwell on a ‘gluten free’ diet and why the Autoimmune Protocol diet worked so well for me.

• He believes the symptoms of gluten encephalopathy are very wide ranging. At one extreme are cases like mine, at the other end is short-term brain fog, and many people won’t realise they have it.

• Migraine is a very common with gluten encephalopathy and may be the only symptom for many years.

• Another common feature of gluten encephalopathy is short term working memory deficits, such as forgetting names, where you put your keys etc. In more extreme cases like mine you can develop anterograde amnesia and fail to form new memories.

• The length of time symptoms persist following eating gluten also vary enormously from person to person. Acute symptoms typically persist for just a few days, maybe weeks, however the effects may be present for 6-12 months or even longer. That little ‘cheat’ may affect you for a year!

• If the immune system is chronically overactive because of extended consumption of gluten, then those antibodies may persist forever, even on adopting a gluten free diet, however symptoms will likely improve to some degree.

• Around 6% of the population (likely significantly more) are gluten sensitive, as opposed to 1% with celiac enteropathy.

• The genetic association of the HLA-type DQ genes is meaningless and neither excludes or predisposes a person to gluten sensitivity.

• The antibodies to gliadin that causes gluten sensitivity are different to the ones that cause celiac and are not routinely screened. Even the CoeliacUK charity still calls gluten sensitivity ‘controversial’. It will take time for this to become common knowledge.

• It is almost impossible to avoid being glutened. Despite going to extremes like living in a gluten free household, never eating out and only eating whole foods it still happens as gluten is everywhere.

• Most people who try gluten free don’t do it for long enough to see an improvement. It can take over a year of complete abstinence before a significant change is seen in some cases.

• Non-celiac gluten sensitivity can lead to other autoimmune diseases (my understanding is that this is because gluten makes your gut permeable and other food peptides can pass into the blood stream).

• This is just the tip of the iceberg. Gluten sensitivity is far more common than we realise, and gluten encephalopathy is likely responsible for a vast number of severe mental illnesses; everything from depression, OCD, ADHD, developmental illnesses such as autism, all psychotic illnesses as well as cognitive and memory related illness can, in some cases, be attributed to gluten. The exact number is unknown.

• By following a strict gluten free lifestyle, eating a healthy diet and looking after yourself, anyone with gluten sensitivity has a very good prognosis.

What this means, he explained, is that a person with gluten sensitivity may just be forgetful, clumsy or feel depressed sometimes. They may struggle at school or at work because they are forgetful. Perhaps they only ever have brain fog, or just feel very tired. They may get headaches and over time may develop an autoimmune disease such as Hashimoto’s or arthritis and never associate these with gluten. They may try a gluten free diet and not get well so after 6 months they give up, or more likely they just occasionally cheat or get accidentally exposed as their families still leave breadcrumbs in the kitchen! The only solution is to behave like someone with celiac disease and be brutally strict about gluten. Even then it could take a year to fully recover.

Except in my case it didn’t take a year – it took 10 days following AIP.

Professor Hadjivassiliou was very interested to learn about AIP. I brought him extensive notes about it. He still is unsure why it worked so well in my case and thought that perhaps I just recovered more quickly than most by going gluten free, and it is true that I continued to make a recovery every day for 12 months after adopting the diet. My thought however is that by drastically reducing inflammation on AIP by eliminating all other potential trigger foods that could permeate my gut, there were far fewer antibodies and macrophages to attack my brain tissue than would have been present on a gluten free diet alone, and I therefore recovered far more quickly. It will be interesting to hear his thoughts when I see him next.

He has run a blood test for immunoglobulin IgG gliadin antibodies and I am awaiting the results. These antibodies are different to the IgA antibodies associated with celiac disease. He has also asked me to come back and see him for a brain scan and an interview, as he wants to write a paper about my experience and teach others about it (especially psychiatrists). He did ask me if I’d like to take a gluten challenge and undergo further tests, however after discussing it we both agreed that the severity of my symptoms meant that the risk was too great. He has also invited me to watch him speak at a medical conference in London next month. I feel I have encountered a very special man, someone who has the dedication, intellect and gravitas to make NCGS a common diagnosis and thus immeasurably improve the lives of countless people. He was even kind enough to pose for a selfie with me!

This has been an epic journey to get here today; a day I shall never forget. I walked into his office with an unhelpful psychiatric label and a ton of questions and left with a new and meaningful diagnosis and a far greater understanding of the path my life has taken since early childhood.

I shall continue to tell my story; I am determined that those lost years of my life are not without purpose. But there is a far greater good here so please share this post far and wide. I have created an infographic to describe, in very simple terms, the process I followed to put my illness into remission. I believe that someone with a severe mental illness won’t be able to successfully reverse their illness by going gluten free alone, it takes too long, requires considerable discipline to avoid accidental exposure, and the risk of a relapse of the illness is high – I know because I tried gluten free when I was unwell and remained sick. We must therefore recommend AIP as the solution. You can download the infographic here.

I have already encountered two people with severe mental illness who, on learning my story, wish to adopt AIP and I am certain there will be countless others who will one day follow this path. We are the vanguard, the ones responsible for raising the consciousness of our civilisation. Humans have been eating wheat for just 400 generations, we are not yet genetically adapted to it. It will take the work of brilliant men and women like Professors Hadjivassiliou and Fasano to make these discoveries, but it is up to us to put these discoveries into action. Like I have always said, we are entirely responsible for our own health; no one is coming to save us.