Cerebellar ataxia through gluten intolerance ?

[Poweruser]

I'm new here, my name is John Dobson, I'm retired age 70 and my wife and I recently moved to a bungalow in Sutton-in-Ashfield, Nottinghamshire from a 2-storey stone cottage just outside Holmfirth in West Yorkshire (Last of the Summer Wine country). My mother was diagnosed with cerebellar ataxia in the early 1980's and I was diagnosed with the same condition in the late 1980's when my wife and I lived in New Zealand.

For obvious reasons everyone assumed the transmission was genetic but after many years of personal DNA testing, not even a post-mortem examination when Mum died, identified a known subtype. We returned to the UK in 2000 and I've annually attended the nearest National Ataxia Centre, as we've moved around the country, specifically the John Radcliffe Hospital in Oxford, University College Hospital in London and now The Hallamshire Hospital in Sheffield for a plethora of MRI tests to observe the degree of cerebellar degeneration. During these visits I've donated copious amounts of blood to be subjected to the latest barrage of DNA tests - without identification success.

However, after my 2016 appointment my neurologist spotted an unusual level of gluten antibodies in my blood sample and suggested I might like to try a gluten free diet in an attempt to arrest further degeneration. It appears that in a few cases of idiopathic (non type-specific) cerebellar ataxia, gluten antibodies have been thought to be a contributory factor in cerebellar degeneration.

Eighteen months down the line the latest MRI has shown 'some improvement when compared to previous ones' to quote the neurologist and anecdotal evidence from friends and acquaintances that both my speech and gait have improved significantly. To add weight to the hypothesis a previous GP pronounced that in hindsight the situation ought not to be that surprising, because gluten intolerance is thought to be genetic', my cerebellar ataxia may only be indirectly genetic and controllable through a gluten-free diet.

[Angelcake1]

I'm so pleased you have an answer and a type of Ataxia that can hopeful be maintained. Was it Professor Hadjivassiliou they you wet to see,? I know he's an expert on Gluten Ataxia. My husband sees him regularly.

[Poweruser in reply to Angelcake1]

Yes, Prof H indeed, my gluten anti-body count is much reduced but still a little above zero, that can mean one of two things, either there is hidden gluten in some food I eat or it takes more than 18 months to leave the body entirely. Some recent research reported by the Coeliac Society suggested it can take up to 5 years after starting a gluten free diet for the anti-bodies to disappear completely.

[Angelcake1 in reply to Angelcake1]

My friend has coeliac disease and it's hard to keep up an entirely gluten free diet, manufacturers change their ingredients, so something that may be gluten free today may not be tomorrow.

We have much respect for for Prof H, your in good hands.

Good luck with getting to your zero target 🌽 Sweet corn at the ready.

[PattiTilden]

Hi John, Yes, ataxia CAN be caused by gluten sensitivity, and it may take many months of being gluten free before you show a full resolution. One of my doctors suggested this to me, but my cause had to do with being given too many drugs for a surgery by the doctors involved. I almost never eat gluten anyway. But he was pretty adamant about the gluten being the cause. I tried total gluten free for many months, and my ataxia just gets worse. Keep up the good work and it may just pay off. Lucky you!! Patti

[Poweruser in reply to PattiTilden]

I'm more than prepared for this remission from further degeneration to be a placebo effect of 'a straw being tugged at' - but long may it last.

[Litty]

Great that they have found something to help.I actually have very little gluten in my diet because our daughter who lives with us is celiac. Like Patti, unfortunately it has no effect on me.

My fitness instructor who wanted to try and help me so we tried cutting gluten and it was during this process that my daughter discovered her problem x

[Poweruser in reply to Litty]

Cutting gluten out of my diet was so much harder than I expected, it's so much more than avoiding just bread and cakes. With cereal products being so often used in the food processing industry as thickening and binding agents products from sausages to HP sauce are on the 'NO' list

I've found the Celiac Society to be an invaluable source of information, they have a smartphone app that can be used to scan the bar-codes of food items in the supermarket and check the 'free from gluten' status.

[Litty]

Oh yes my daughter has so much trouble. We have found that flours from Doves and Genius bread. I do not bake but a friend does for she uses xanthan gum. Chocolate is her big passion and she hates Lindt! x