Diet: Hi all, I have not been diagnosed with a... - Ataxia UK

Ataxia UK

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Diet

Chris020485 profile image
11 Replies

Hi all, I have not been diagnosed with a certain type of ataxia yet , but my neurologist has been trying to find out for about 4 years now. I have problems with my balance also I have a gait as I walk. I would like to find out what foods I should try to put into my diet and if theres anything I shouldn't be eating.

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Chris020485 profile image
Chris020485
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11 Replies
wobblybee profile image
wobblybee

Hi Chris😊

A normal healthy balanced diet is recommended for the majority of ataxias.

The exception is Gluten Ataxia, a rigid Gluten Free diet must be followed to avoid flare ups of symptoms. There is a specific test available.

See ataxia.org/pdf/Ataxia_Diet_...

If you haven't already done so, see ataxia.org.uk for online info about ataxia.

😊xB

Chris020485 profile image
Chris020485 in reply to wobblybee

Hi, Thankyou for the diet information link which I found very useful, all I have been told at thisstage that it is a herediatary form of ataxia in which I haven't had much success in finding out much information as yet.

wobblybee profile image
wobblybee in reply to Chris020485

You would think, if the ataxia is hereditary/genetic that the type would be easy to pinpoint but surprisingly this is not always the case. Ataxia is complicated, and often poorly understood in general. Here in the UK, patients should be reviewed yearly, symptoms can change and the person may benefit from being referred for various therapies.

After I'd donated DNA, it took 4yrs before a link was found with a mutant gene. I was stunned to find out my parents had been carriers (unaffected themselves), we had no family history but it was genetic.

It's not essential to know the specific type to realise most of the information available about ataxia, relates to basic changes we all experience with the condition. ataxia.org.uk and ataxia.org offer reliable information, obviously there are many other sources but it's very easy to misinterpret medical jargon🤔xB

isabelalfaiate profile image
isabelalfaiate in reply to wobblybee

Dear Beryl,

Thank you for the links, I found them very helpful.

Roshidah profile image
Roshidah

Did your doctor makes comparison from your MRI results yet? I've been sick for 9 years & only this year my doctor found that the size of my cerebellum is shrinking based from the comparison he made on my yearly taken MRI. He said it's confirmed that I hv cerebellar ataxia but not sure which type yet. He advises me to consume supplement Neurogen E tablet for my nerve (my left eye got delay response), vitamin d3 (11000iu) due to my muscle weakness & probiotics to help remove toxins from the brain.

Chris020485 profile image
Chris020485 in reply to Roshidah

These supplemets, are they just what you buy from boots or are you prescribed them by your dr. Also I had an MRI scan in Birmingham but that was in 2013 and I assume it was ok as I never heard back.

Roshidah profile image
Roshidah in reply to Chris020485

Those supplements are prescribed by my doctor. He said it could help treating my conditions. Mybe u can ask your doctor about doing new MRI again & compare it with the previous MRI to see if there's any changes in size of the brain.

Chinquecento profile image
Chinquecento in reply to Roshidah

Hi Roshdah Could you tell me which probiotic you take and does it help you? Also is vit.d3 good?

february profile image
february

I find that too much caffeine effects my ataxia (tea, chocolate), as it makes me jittery. As a rule, I DON'T drink alcohol, as it makes my balance even worse then it already is! I just try to eat as healthy as possible, no processed foods and lots of fresh fruit and veggies.

Chris020485 profile image
Chris020485

I have cut out regular tea/coffee but I do have green tea and strawberry teas., also I very rarely eat fruit and veg as I live on take aways,I read on here that eating eggs help a lot for some reason so as from today im having an omelette every morning, also im going to cut out all the kebabs etc etc.i am going to try and eat a lot more healthy.

Chinquecento profile image
Chinquecento

Hi Roshidah. Could you tell me which probiotics do you take? And do you think they make a difference to you ?also is vit. D3 good?

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