Getting diagnosed with Gluten Ataxia took almost a decade. I first became ill when I was 23, up until that point I’d always been well without any health issues. I had moved in with my boyfriend, returned from a ski season in Austria and was working as a hairstylist.

I had been to my friends riding that day and I came home and suddenly the room began to spin and I felt so ill I can’t describe it, I believe it was triggered by food poisoning.

I lost 1.5 st in a week and sadly the GP wasn’t at all helpful despite my symptoms, Over the next few years, I got passed around various hospital departments from gastroenterology, brain physio to audiology.

My symptoms were a combination of gut, balance and visual. Throughout the day I would have waves of what felt like a panic attack mixed with vertigo, I would slur my words and have constant brain fog. I had always been sharp and on the ball but I’d become so forgetful.

I didn’t go out, I went to work and came straight home to bed, I would feel so disorientated like my vision was bobbing around, sometimes it would make me so dizzy I’d hold on to my partner and close my eyes so my vision was still.

I was eventually referred to Dr Meehan an audiologist at Derby Royal Hospital and she thought I might have Gluten Ataxia, a condition when gluten can damage the brain as well as the gut. I was referred to Proof Marios Hadjivassiliou at Sheffield Royal Hallamshire Hospital. He began his tests with a MRI scan of my brain to check for damage to my cerebellum and ran a series of blood tests.

I couldn’t believe that something so simple could have made me so ill and been missed for so long.

My results came back positive and I was told to follow a very strict gluten free diet, stricter than a normal coeliac gluten free diet. I had my last meal from my local bakery and sobbed, I enjoyed baking and eating out so going gluten free was a huge change to my life but I was so relieved to find the answer.

I have been following a strict gluten free diet since 2015, I am so sensitive to trace amounts of gluten that our entire home is gluten free including the dog! I can’t kiss my husband if he has eaten something with gluten in it as it will make me ill, I can no longer work with products in my salon which contain wheat protein which is in most of the hair products we use, after my blood levels were so elevated I had to remove myself from my own salon for a few years and now run a gluten free studio alongside my main salon so I can keep doing what I love. Being allergic to your business isn’t fun.

I have to have a brain scan once a year and blood tests every 6 months to keep an eye on my condition, I have been told I am back in the normal range on my brain scans now which is such a relief.

Our son has been tested and we have been advised to keep him gluten free as the damage is at a cellular level and the brain is already damaged by the time symptoms present.

 I have built this site as there is still very little information out there on Gluten Ataxia and I hope someone may recognise their symptoms and finally discover what is the matter with them by reading the information I share.

If left untreated GA can leave you unable to walk or swallow, it’s a very serious condition which people should be more aware of with gluten being so heavily consumed.

Thank you for taking the time to read my story and I hope you find what you are looking for.

Hayley x

I just couldn’t believe that eating bread could put me in a wheel chair!

Hayley