My life changed forever in January 2010 when I fell ill.
Before then, I was successful in business (I was the CEO of a thriving charity), had 2 great kids, a lovely partner who I would go on to marry and a great social life. Little did I know what was coming, like most illnesses. I expected to get better!
In December 2022, nearly 13 years after my first attack, I was finally diagnosed with Gluten Ataxia, a very rare autoimmune disease. Yes, 13 years, and it’s all thanks to the Brain and Spine Foundation and a special lady called Mikki, who did not only believe me, but supported me when the GP had broken me.
I may be very blunt but they had. They really made me believe that the woman who had been nominated Sheffield Business Person of the year in 2009, was a stressed, menopausal, depressed, medical attention seeker who was wasting her time. I was anxious every time I sat in front of a GP because history told me they wouldn’t listen.
Mikki listened, she heard, and she believed me. The Foundation supported 1-hour sessions and in those sessions Mikki helped me draw a matchstick man of my symptoms.
I would basically explain all my weird and odd symptoms: I fell over if I looked right, my balance and coordination were terrible, my legs had numb patches, I got electric shock pain, my brain slowed to the point where it would just whir like a computer screen and so much more.
As I talked, she would say: ‘’Write that down, write that down!’’, and over time I had a sheet of paper that told a story of someone who was quite seriously ill, and not of some medical attention seeker. When I showed my husband the matchstick man, he said “no wonder you feel crap”! That matchstick man gave me one last drive at the GP’s.
I want to tell you that they listened, but that would give you false hope. What they did was to give me the information to do the research that enabled me to find who I thought was the right person. From there I decided to pay privately. I’m furious that I had to, but I had no choice.
My full journey would fill a book and it makes me so angry!
In simple terms, when I have the smallest amount of gluten, TG6 antibodies turn positive and those antibodies in turn attack my cerebellum in my brain for months after eating it.
An MRI head and spectroscopy scan showed damage in my cerebellum, which is responsible for balance, coordination, movement, cognitive function and so much more. I have no stomach symptoms so would never have linked gluten to my issues, the only connection was my daughter was coeliac and had the coeliac gene which I later tested positive for.
I’m told Gluten Ataxia is rare, personally I don’t believe it is and neither does my Neurologist and Rheumatologist, we just believe it is seriously underdiagnosed!
Thanks to Mikki and all the wonderful people behind the scenes at the Brain and Spine Foundation, I now know I have a chance to stop the deterioration, work with my specialist ataxia team in Sheffield and hopefully give something back to help others get listened to and diagnosed.