What is Gluten Ataxia?
It’s not all in your head
Gluten Ataxia is a rare neurological autoimmune disease. When somebody has gluten ataxia, the antibodies that are released when they digest gluten, attack a part of the brain called the cerebellum.
Similar to coeliac disease but it damages the brain and not the gut.
The cerebellum is the part of the brain located in the back of the head above the neck. The cerebellum is responsible for movement and has a direct impact on activities such as:
balance
speech
posture
walking
running
It can be related to coeliac disease as well as non-coeliac gluten sensitivity. People with gluten ataxia often don’t always have the same digestive issues as those found with coeliac disease.
If left undiagnosed it can result in irreversible brain damage and shrinkage.
Gluten ataxia is a progressive condition, which means that symptoms may start off mild and almost unnoticed, and gradually progress to being debilitating.
The symptoms of gluten ataxia are similar to symptoms of other ataxia conditions, which can make it tricky to get an accurate diagnosis.
Some of the more typical symptoms a person may experience include:
problems with general movements, such as walking or arm control
unsteadiness
issues with coordination
loss of precise movement skills, such as the ability to write or button a shirt
difficulty talking
vision issues
symptoms of nerve damage in the hands, feet, and limbs
Gluten ataxia is a slowly progressive disease. It is very similar to other types of ataxia that also affect the cerebellum. This can make it difficult to diagnose or recognize as a specific, treatable condition.
It is not uncommon for a person’s general movement skills to be affected first, which is typically demonstrated by trouble walking. A person is more likely to:
trip
stumble
have an abnormal way of walking
As the disease progresses, a person may start to notice issues with:
dizziness
balance when standing
difficulty with speech
writing or getting dressed
When a person first experiences these symptoms, it is likely that they can reverse the progression by eliminating gluten from their diet.
If the condition is not stopped, however, the worsening symptoms can become permanent.
Thankfully once diagnosed it can be controlled with a very strict gluten free diet
Gluten ataxia is a relatively newly discovered condition and sadly many healthcare professionals still dispute its existence or are unaware of it making it very difficult to get a diagnosis
How can I get Diagnosed?
In the Uk, we are very fortunate to be able to request referrals to specialists at the GP.
Ask for a referral to Professor Marios Hadjivassiliou at the Royal Hallamshire Hospital Sheffield, he leads the research on Gluten Ataxia and can give you a diagnosis.
At the time of writing this the GP’s do not have access to tests to diagnose this condition, nor can hospitals without a specific immunology lab, making diagnosis very difficult.
The antibodies that are readily available in many medical centres are transglutaminase 2 (TG2) and endomysium antibodies (EMA). These 2 only tell you if the patient has coeliac disease, not a neurological manifestation (Gluten Ataxia) Please don’t have these tests and think you are negative as I was for almost a decade.
Tests Needed For Diagnosis
Blood Tests: antigliadin antibodies + TG6 antibody (only available at Sheffield at time of writing)
Scan: MRI scan of the brain + MR spectroscopy. This measures how well the balance centre works.
Treatment
Completly Gluten Free Diet
Removing all traces of gluten from your diet, I also can’t have Oats.
Wheat, Barley & Rhy all contain gluten, there is no cheating on this diet if you want to halt the progression.
Some gluten-free processed foods may also be too much for you as they are measured to 20ppm in the UK but some brands do produce to 5ppm making reaction and damage less likely.
Click below to find out where you can get caught out
HIDDEN GLUTEN
Prof. Marios Hadjivassiliou
Marios is leading the way and giving hope to people all over the world with this sneaky and cruel disease. Without his research and dedication to his work, there would be very little hope of diagnosis or improvement for people with this condition. With a devastating ignorance in the gastro area of medicine, there are very few ways this condition is picked up on.
Prof Hadjivassiliou is a full-time Consultant Neurologist and the Academic Director of the Department of Neurosciences, Sheffield Teaching Hospitals NHS Trust, Sheffield, UK.
His primary research is in the neurological manifestations of gluten-related diseases, and the ataxias, areas that he has studied initially for his MD thesis and subsequently became the focus of his research career over the last 25 years. He has published extensively in high impact journals including 3 first-author papers in the Lancet. His H index is 49.
He runs a weekly gluten sensitivity / neurology clinic, regular vasculitis / autoimmunity and weekly ataxia clinics and receives referrals from all over the UK and Internationally.
He is the director of the Sheffield Ataxia Center caring for over 2500 patients with ataxias and a founding member of the Sheffield Institute of Gluten Related Diseases (SIGReD). He cares for almost 1500 patients with neurological manifestations of gluten sensitivity and coeliac