An overview of the ataxias:
Hi, I’m Carol, and I run the “Gluten Ataxia and Autoimmune” support group as a volunteer for Ataxia UK. I am not a medical professional, but a person who had a diagnosis of ‘possibly ataxia’ desperate for answers and found out what I could about gluten ataxia.
There is a lot of information about gluten ataxia on the web, and some of it is misleading. Gluten ataxia is a progressive, autoimmune and neurological condition, similar in some aspects to most other ataxias. We aim to raise awareness of gluten ataxia and provide information to enable you to make an informed choice as to whether a gluten free diet is suitable for you.
Getting a full diagnosis can be a lengthy process. This journey leaves patients and families stressed and drained.
The one thing that all types of ataxias have in common is the damage that is caused to the cerebellum. The cerebellum is the balance centre of the brain, positioned at the back and the bottom of the head.
The main symptoms of ataxia are balance, fatigue, and speech problems. But there will be different degrees of how these symptoms effect individuals.
There can be other symptoms too as GA (Gluten Ataxia) is an autoimmune condition, but everyone is different:
- Painful, stiff, and aching legs, like you are having to drag them around.
- Migraines and headaches.
- You may or may not have digestive issues.
- Brain fog or a feeling of being ‘spaced out’.
- Low mental health, irritable and unable to concentrate or multitask.
- Peripheral neuropathy, which is pain, burning sensations and tingling in your extremities.
- Vision problems.
- Generally feeling unwell.
- Other allergies or sensitivities.
- Dizziness.
There are three ataxia clinics in the UK. The UCLH at Queen’s Square in London led by Professor Giunti and her team that mostly specialise in the hereditary and genetic types of ataxias, and the Sheffield Royal Hallamshire Hospital clinic run by Professor Hadjivassiliou and his team that mostly are associated with gluten ataxia and the autoimmune ataxias. Also, the Oxford Ataxia Clinic at the John Radcliffe Hospital.
In the next article we will be looking at the tests unique to the Sheffield Hospital that are used for a positive diagnosis of gluten ataxia and autoimmune ataxia. If you think you might have gluten ataxia, which is progressive then time is critical. Speak to your doctor or neurologist and get a referral.
If you need information, advice or support, please contact the Helpline by phone to 0800 995 6037 or by emailing help@ataxia.org.uk. The Helpline is open Monday to Thursday, 10.30am to 2.30pm.
