Cerebellum shrinking

[Carolss]

Is the cause of symptoms that the cerebellum continues shrinking . Has anyone experienced not having more and more symptoms. Has any one experienced mild symptoms that have not progressed.

Thanks for the responses

[weegiz12345]

Hi I can only speak for myself I'm57 and my syptoms showed their selves very slowly at first I was hardly bothered at all. But over the last year my symptoms are much worse like most of the folk on here, balance, coordination, chocking episodes, feet being permanently uncomfortable, writing,typing to name but a few. I have progressed very quickly this last year so I'm hoping things will now slow down but as we all know there's not much chance of that.All my syptoms have progressed but some things associated with ataxia haven't shown themselves to me yet.

Take care of youself and keep talking to folk on here.

[Poweruser]

I retired in 2012, then we moved to a terraced cottage in West Yorkshire. My new GP referred me to the Sheffield Ataxia Specialist Centre where I met Prof Marios Hadjivassiliou. At my first consultation in 2013, we discussed gluten ataxia, but didn’t pursue the issue. In 2016, Prof Hadjivassiliou suggested a gluten-free diet and organised an initial MRI scan to provide a starting point.

Gluten ataxia is caused by the release of antibodies when digesting gluten. The antibodies attack part of the cerebellum by a process not yet fully understood, causing ataxic symptoms. Gluten ataxia is thought to be responsible for a significant proportion of previous cases of idiopathic cerebellar ataxia.

A year later, I’d achieved significant improvements in both my speech and mobility. I underwent a second MRI scan, which revealed marginal improvement, even though my commitment to the gluten-free diet was not 100%.

I was then referred to a dietician and joined Coeliac UK. Despite not being coeliac, I’m still able to take advantage of their extensive directory and app. I have continued to see improvements in my mobility and speech, and I’ve taken up building miniature robots and 3D printing, which both indicate that my coordination and control has improved.

Gluten ataxia is not thought to be hereditary, but my mother, who also suffered from cerebellar ataxia, may have been gluten intolerant, which is known to be hereditary. I would encourage anybody with idiopathic ataxia to ask your neurologist to check gliadin, endomysium and transglutaminase antibody levels (these are not routine tests for gluten sensitivity). If these are elevated, then consider adopting a supervised gluten-free diet. There is nothing to lose and potentially much to gain.

[pinjem in reply to Poweruser]

Thanks, Poweruser, my progress has been only noticeable if I look back over say 6 month periods, or a year, but progress it is, maybe I can hope for further progress even now. It is so worth giving up gluten, I improved dramatically in the first few days and very slow improvement since. I seem to have gluten ataxia and am very grateful there has been a chance of improvement entirely by helping myself. Try it anyone, just for a while, if you do not know your ataxia is caused by, what is there to lose? I have a little change to my cerebellum, If I had known 5 years ago what I now know, would I even have ataxia?

[Devrim in reply to Poweruser]

Thank you very much for important information.

[swtb]

Hi Carolss, you will get a boatload of well researched info from Sunvox on this site re slowing & even stopping ataxia symptoms. He has shared his own regimine and included published links to back up what he is doing. Always imploring us to do our research and talk with our doctors first.