Gluten ataxia: a personal journey

Gluten ataxia is an autoimmune, neurological and progressive condition in which the autoantibodies produced by an immune response to gluten sensitivity attack the cerebellum in the brain.

Maybe you are aware of multiple sclerosis (MS), Parkinson’s or motor neurone disease... well, ataxia has some similarities with these conditions.

There are many types of ataxia, but they all fall mainly into four group: hereditary and genetic; acquired; idiopathic; and autoimmune. Gluten ataxia is in the autoimmune group.

It has associations with coeliac disease in which the antibodies produced by the immune system attack the digestive system, but in gluten ataxia the antibodies cross the blood–brain barrier and attack the cerebellum – the balance centre of the brain.

We all take our balance for granted and it is not until the instant feedback system throughout the body is not working properly that we realise how much we rely on it.

My gluten ataxia symptoms started many years ago, when I first noticed unusual things happening to my balance.

I had suffered with irritable bowel syndrome (IBS) most of my adult life, had migraines for 20 years, and was told by Professor Hadjivassiliou at the Sheffield Hallamshire Hospital that these symptoms are typical of what they see at the Ataxia Clinic.

Time is critical

Looking back I now realise that the digestive problems and the migraines were probably caused by eating gluten.

Gluten is in wheat, barley and rye, so in most of the staple foods we all eat – cereal for breakfast, a sandwich for lunch, pasta for tea.

Back in 2012 I felt unwell. Gluten ataxia crept up on me insidiously at first, and thinking I was a bit “run down” I soldiered on. It wasn’t until three years later that I went to the doctors with walking and balance problems.

My GP carried out simple tests to rule out MS and other neurological conditions. But because of the tinnitus I had, he referred me to the ear, nose and throat (ENT) department at the local hospital for investigations.

It must be pointed out that if the TG6 blood test was available then at primary care level, then I probably would have been able to reverse the gluten ataxia with a gluten-free diet.

Why is an early diagnosis so important? Because there will be a pivotal point during the patient’s journey with gluten ataxia, and if a gluten-free diet is adopted before this point, there is a chance that the neurons in the cerebellum might be rescued. If not, it can mean a poor outcome with life-changing disabilities for the patient. The vital message is that time is critical to diagnosing, as is adopting a gluten-free diet as soon as possible.

In 2015 I had the first brain MRI and the specialists in the ENT department did not spot the atrophy of the cerebellum that was already present. This is a red flag! Does cerebellar atrophy need specialist investigation?

Two years later, and still under the care of the local ENT department, my voice started to slur and sometimes I found speaking difficult, which I found very worrying. The ENT consultant said: “It is probably caused by stress”.

All the tests were normal at the ENT department and in 2017 I was referred to neurology. The neurologist reviewed the MRI scan taken in 2015 and told me: “There is nothing wrong with you”. I knew something was wrong – feeling like this was not normal.

I sought a second opinion and in 2019 (four years after seeing my GP) I had a second MRI brain scan. There was atrophy of the cerebellum and I was advised it is “probably ataxia”.

Seeking a diagnosis

I joined the Farnham Ataxia UK support group. It was good to talk to others that had ataxia and one of the members told me that gluten can cause ataxia. That was the real game changer for me.

I learnt as much as I could about ataxia. PubMed research papers became my favourite reading, and the outcome was that I tried a gluten-free diet. There was nothing to lose – the referrals and tests were taking so long and I knew that time was critical for the outcome for my future health.

For a diagnosis of gluten ataxia, there are factors to take into account. The patient needs to be eating gluten. It is the same if a TG2 test is needed for coeliac disease; this is because the body needs to be producing antibodies against the gluten.

After a few weeks on a gluten-free diet I felt better.

I thought it was probably gluten causing the ataxia.

Back in 2012 I felt unwell. Gluten ataxia crept up on me insidiously at first, and thinking I was a bit ‘run down’ I soldiered on

The neurologist I was seeing then did not believe that gluten can cause ataxia and he referred me to the to University College London Hospitals (UCLH) – one of the specialist ataxia clinics in the UK.

In 2020 I had numerous tests for hereditary ataxias and another brain MRI scan. All the tests came back negative but I did have a confirmed diagnosis of idiopathic ataxia. I asked to be referred to the Sheffield Ataxia Clinic and Professor Hadjivassiliou.

It had been a long journey but finally my first appointment with the Professor was in 2022.

There is no cure

What a revelation, finally talking to someone who understood gluten ataxia. He listened carefully to what I told him, my family history of autoimmune conditions. IBS and migraines were also significant pointers for gluten ataxia. The professor said I needed to have MRI spectroscopy to see what was happening to my cerebellum. We discussed re-exposure to gluten for the “gluten challenge” in order to pick up the antibodies, but I refused to make myself ill again.

He understood and some of his patients are self-diagnosed, like myself.

Unfortunately there is no “cure” for gluten ataxia, just a strict “for life” gluten-free diet, and the sooner this diet is followed then the better the outcome.

Today my walking and balance problems are a daily challenge. Dizziness is with me 24/7 and fatigue can be overwhelming. Speech problems happen most days, which has a profound impact on my self-esteem. Simple pleasures I once enjoyed but I now cannot physically do, so I try to focus on things I can do.

Luckily the fine dexterity in my hands is preserved. Brain fog comes back if I have been “glutened” and the ataxia symptoms become much worse.

A year ago the early symptoms of ataxia came back and now I follow a grain-free and paleo diet, which makes eating away from home difficult. No ultra-processed foods either, so all meals are cooked from scratch. There are many who have adopted this type of diet to try and reverse the gluten ataxia. If only we had been diagnosed earlier.