It’s not coeliac disease

I’ve just had a consultation with professor Sanders, a gastroenterologist who specialises in coeliac disease and works alongside Professor Marios Hadjivassiliou at the Royal Hallamshire Hospital. He told me that I do not have coeliac disease, confirming that my negative blood test and endoscopy in 2011 were accurate and now a detailed genetic screen has ruled out any possibility of enteropathy. What this means is my reaction to gluten is purely in my brain. I’ve also learned a great deal more about my illness in the past few days and have created a new infographic to help identify the early warning signs. As the first two people diagnosed with gluten psychosis were eventually also diagnosed with coeliac disease I guess this makes me a world first!

Prof Sanders explained to me that gluten ataxia and gluten encephalopathy are disorders distinct from coeliac disease, and while the pathogenesis of these illnesses are the same - antibodies provoked by the ingestion of alpha gliadin a common gluten protein found in the prolamine of wheat, barley and rye grass seed grains, the organ these antibodies affect is the cerebellum in the brain rather than the digestive system.

It is thought that the antibodies involved are different to the ones that cause coeliac disease, being a type G immunoglobulin rather than the type A found in coeliac disease, possibly the AGA-IgG antibody, and that these antibodies affect tissue transglutaminase 6 (tTG6), a protein expressed in nerve tissue, particularly in the Purkinje cells in the cerebellum. Some researchers also theorise that it may even be a different gliadin protein in the gluten that triggers these antibodies, but this needs to be explored further. Sadly, testing for my disease doesn’t exist yet, but Prof Sanders and his colleagues hope to invent one within the next decade. It can't come soon enough.

The professor told me that psychosis attributable to gluten may be quite rare, yet no one really knows how many people may have this disease as no epidemiological studies have ever been conducted. What is known is about 0.7% - 1%  of the global population have schizophrenia, psychotic depression, anxiety, bipolar and other forms of psychotic illness. Studies indicate that a subset of people with these illnesses have antibodies to wheat gluten that is a significantly higher proportion than seen in the general population and that the immune system is implicated in around 9% of cases. Studies have also shown that the number of cases of schizophrenia that may be linked to gluten is unknown, and that only a subset of these cases will be attributable to gluten antibodies.

Despite this lack of concrete evidence, Prof Sanders told me that when he started looking into the link between gluten and schizophrenia he encountered many studies linking wheat consumption and psychosis, and even one dating back to the 1980’s conducted by psychiatrists in his hometown of Sheffield.

We discussed how my illness onset. Of particular interest to him was what happened to me when I went on a low carbohydrate diet back in 2003/04. The change I experienced back then was almost imperceptible and hard to articulate, but the best way I can describe it was I had a better sense of where I was – my spacial perception and coordination had improved. I also had fewer migraines, fewer bouts of brain fog, improved mood and less fatigue. These symptoms may serve as an early diagnostic indicator and big red flag for potential future problems brought about by a reaction to gluten in people who notice these little changes when going gluten free. With half the western world on a diet at some point this simple fact, that a hard to describe change in the way the brain functions when doing keto, Atkins, low carb, FODMAP, AIP or any other diet that inadvertently removes gluten should be the first warning sign that the brain is being affected by gluten.

But perhaps the most important warning sign is what happens after a long period on a gluten free or other restrictive diet which then abruptly ends as mine did in 2004 and 2011, because that is what brought about my psychosis. A reaction to dramatic increases in gluten are the big indicator, and the professor explained that we are all eating much more gluten than we realise as it’s cheap and adds a nice texture and appearance to our foods, and that this volume of gluten in our foods is increasing every year. In other words, the more gluten you add to your diet, the more likely you are to react, particularly if you go from zero to eating pizza, pastries and bread at every meal like I did back in 2011. He also wondered if the ultra-low gluten content in many foods that are legally classified as ‘gluten free’ may still trigger a reaction in people like me. He even warned me that foods with an almost zero gluten content are everywhere, citing that the glaze on a curried chicken would have originally come from wheat but is technically ‘gluten free’, having below 20ppm.

I have also just published my latest infographic describing my early symptoms which you can download here.

I also had an unexpected email from my former psychiatrist who shared a research study with me that showed how two patients with schizophrenia recovered following a ketogenic diet.

In his email he stated that he "wondered if your recovery was not just from excluding some foods but also an active antipsychotic effect of the ketosis. After all we use anti epilepsy drugs for bipolar illness and ketosis treats epilepsy. There is a logic but all speculation of course. After your experience I do wonder if we should not ask all people with psychosis to trial a no carb diet once just in case it is life changing."

I have always said there is more to my recovery than just gluten free, and a ketostix testing strip did reveal trace amounts of ketones in my urine, indicating a low state of ketosis had been achieved. Maybe there is some truth to this, that while gluten had caused my illness to onset, that it was the low carb aspect of AIP, coupled with the complete removal of all gluten and other cross-reactive proteins that allowed me to recover far more quickly than a gluten free diet ever could. It is an area most definitely worth exploring further.