TG6 , gluten ataxia, antibodies and a strict diet

[cyclist49]

I have been diagnosed with Idiopathic Cerebellum Ataxia for 6 years . My consultant recently arranged for a TG6 test at Sheffield hospital . The result came back as mildly positive ( 4.2 with 4.0 as normal ) As I understand it , a strict gluten free diet should remove antibodies from the body preventing antibodies attacking the balance centre of the brain . This may result in stabilisation of the disease.

My question is :If one has gluten sensitivity and removing antibodies can stabilise the condition , why does Sheffield insist the diet must be strictly gluten free. I would have thought that if the diet was 95% gluten free this could also result in some stabilisation

I would appreciate peoples views. It seems strange to insist on strict diet as being essential, especially when it is uncertain if any improvement will be gained

[pinjem]

The Professor is the expert. No gluten, ever again. I wish I had had this knowledge and advice several years ago. I might have a more normal life. Do you want to take the risk or do you want to maximise your chances of improving?

[wobblybee]

I tested negative..but a friend is diagnosed with Gluten Ataxia. I suspect she must have had much higher positive reading because…unless she keeps to a strict Gluten Free Diet, including being scrupulous about cross-contamination of utensils etc, and being aware even some medications can be ‘tainted’….she notices a distinct triggering and worsening of ataxia symptoms.

It is a fact that some people do not notice an improvement after changing to the diet …but it’s known that it can take up to 6mths to notice any improvement so a lot of patience is required…and as with all ‘therapies’ there can be variations person to person.

[cyclist49 in reply to wobblybee]

Thanks for your thoughts

Gordon

[penelope2]

It can take upto 2 years for some to stabilise GF. Strict and sticking to the diet is summarised. I drop of water in a gallon is equivalent to the 20 parts per million allowed on a GF diet, or 1 gluten containing breadcrumb eaten by mistake can effect some for up to 2 months. A GF diet does not mean shopping down the free from aisle at the supermarket.You are under the care of the best in this country and one of the world leaders of the damage that gluten can do to us vulnerable people.

I don't like to be rude but you need to get real and look after your health!

Also the autoantibodies never leave the body, even on a strict GF diet, they just wait and react to that 5% of gluten!

Someone else replied that they wish they had been told to go GF and all I can assume is that your symptoms are mild, carry on as you are and they may not be mild for long.