"Misdiagnosis and Treated in an undignified manner"

I was admitted to Raigmore Hospital in December 2016, whilst celebrating New Year with my husband and his family in their home in Sutherland.

I had been suffering from sporadic idiopathic ataxia for six years previous to being admitted to Raigmore. The cause had never been diagnosed, and I hadn't actually been told that what I had was ataxia. I had been told around late summer 2016 by one of my patients (I work in medicine), that some brain damage could be caused by gluten intolerance. I had been cutting out gluten due a severe digestive issues starting in 2015, and I had noticed my ataxia attacks had reduced but hadn't connected gluten with ataxia until my patient mentioned this.

Prior to the Christmas period, at home in Somerset, I had eliminated gluten from my diet, but over the Christmas period, whilst staying with family, largely due to a lack of my understanding of how many processed (Christmas) foods (not usually in my diet) contained gluten, my ataxia which had been gone for two months previous, returned very severely. It rapidly left me unable to walk or talk, and I developed a repetitive twitch and loss of some sensation in my left hand and arm.

By the time we got to my husband's family, I was in a terrible state and was admitted to Raigmore A+E.

I told the A+E doctor that I had ingested a lot of gluten over the Christmas period, mainly accidentally, due to contamination by sharing foods, or due to eating foods without checking the packaging, I explained that my usual good digestion had become worse and I believed I was sensitive to gluten and suspected that I was having gluten ataxia. The young doctor listened well and agreed that they had even heard of some cases of MS improving on a gluten free diet.

I was then admitted to the hospital where I saw two neurologists. I had a brain scan which came up clear, and over four days, my symptoms gradually reduced in severity. I abstained from gluten and this the reason why my symptoms settled. I was told quite firmly that I had a "functional disorder" and that basically there was no physiological cause for my neurological issues and that it was definitely NOT gluten ataxia. They told me it was unlikely to improve if I didn't take advice on how to "self help" when one has a "functional disorder". My honest opinion, as someone in the medical field, and a person who has a good understanding of medicine, is that the diagnosis of a "functional disorder" is an archaic one, similar to "IBS" which we are now realising often has a physiological cause, such as a food sensitivity.

I was told by the doctor gluten ataxia was too rare, therefore I couldn't have it, despite not even being offered any anti gliadin tests. I ensured the doctor that I had been ataxia free for a few months prior to Christmas on my recently introduced gluten free diet, and my digestion and severe attacks of fatigue had improved on my gluten free diet. I explained how it all worsened again over the Christmas period when I repeatedly accidentally ingested gluten. This member of staff spoke to me as if I was  a hypochondriac, was of a lower level of intelligence, and if I was inventing stories, I have never felt to patronised and poorly listened to by a doctor in my life. I have fully diagnosed stage four endometriosis , and I had been told by a nurse in the past that I was "inventing" the severity of the pain. I suppose it was close to this in terms of a lack of concern and a lack of care.

I told the doctor that I would write a letter in two or three months of abstaining from gluten, after a period of what I knew would be ataxia free. 

I did this, once again explaining how I had had the ataxia since 2010, progressively increasing in severity and frequency, until I finally abstained from gluten, which resulted in a 100% recovery from the attacks and the neurological episode I had at New Year 2017.

I expressed my concern that this doctor informed me that they see one person a week with a functional disorder, and that it was very common, yet they would never consider gluten ataxia as a differential diagnosis. How could this be? People could be potentially wheelchair bound, due to this arrogant doctor's poor understanding and unwillingness to accept a rare but real condition. I feel secretly, my husband I know the damage un-diagnosed gluten sensitivity can cause to your life, and we have been the lucky ones, to have self informed, and self diagnosed, and escaped the disease. Two years on, we now live a life free from ataxia (as long as I don't accidentally ingest gluten which has happened once or twice after eating in restaurants). I feel this is something that needs to be shared, not swept under the carpet by the medical profession, with some form of arrogance or scepticism, like this neurologist had towards the disease.

I never received a response from Raigmore or the neurologist that I wrote to regarding my treatment and the fact that my ataxia of six years had been cured by abstaining from gluten. I found this very concerning and disappointing as lessons have not been learned and no doubt more gluten ataxia patients will continue to go on un-diagnosed.

Please share this story, if it helps at least one person self diagnose and prevent the onset of debilitating gluten ataxia, it would be worth it.

Please also, Raigmore Hospital, ensure that doctors so keep up to date with the latest in the medical field, and ensure their "ego" doesn't get in the way of listening to a patient's medical history and opinion on what could in their body.