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Ataxic gait
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TG6 , gluten ataxia, antibodies and a strict diet
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
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
cyclist49
in
Ataxia UK
2 months ago
TG6 and gluten ataxia
I was diagnosed with Idiopathic Cerebellar Ataxia in 2018 and had all the usual tests which proved negative . My neurologist in Aberdeen recently managed to arrange a TG6 blood test in Sheffield . The result was 4.2 U/ML , and a result >4 is positive.I have none of the usual symptoms of celiac disease
I was diagnosed with Idiopathic Cerebellar Ataxia in 2018 and had all the usual tests which proved negative . My neurologist in Aberdeen recently managed to arrange a TG6 blood test in Sheffield . The result was 4.2 U/ML , and a result >4 is positive.I have none of the usual symptoms of celiac disease
cyclist49
in
Ataxia UK
3 months ago
Idiopathic ataxia or unknown cause.
Hi all. I urge anyone who has not yet been diagnosed with a particular type of ataxia , so idiopathic of unknown cause, which means they do not know what is causing it. To contact Sheffield and see if you can participate in a new study into gluten ataxia. Although a gluten free diet will not cure ataxia
Hi all. I urge anyone who has not yet been diagnosed with a particular type of ataxia , so idiopathic of unknown cause, which means they do not know what is causing it. To contact Sheffield and see if you can participate in a new study into gluten ataxia. Although a gluten free diet will not cure ataxia
penelope2
in
Ataxia UK
3 months ago
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Improving diagnosis, and management of Gluten Ataxia.
🙂People in the UK Improving diagnosis and management of Gluten ataxia Ataxia UK, Coeliac UK, and the Sheffield Hospitals Charity have awarded funding to Professor Marios Hadjivassiliou and colleagues at the Sheffield Ataxia Centre, for a research project to help improve the diagnosis and management
🙂People in the UK Improving diagnosis and management of Gluten ataxia Ataxia UK, Coeliac UK, and the Sheffield Hospitals Charity have awarded funding to Professor Marios Hadjivassiliou and colleagues at the Sheffield Ataxia Centre, for a research project to help improve the diagnosis and management
wobblybee
in
Ataxia UK
3 months ago
My attempts at managing SCA3
I have a COMPEX SP8.0 (it is not cheap, and it is the best EMS on the market) and it can be adjusted based on its measurement of the muscles. I am not taking any half measures when dealing with my SCA3. I do not go to maximum EMS levels as this can cause later discomfort. However, with regular use I
I have a COMPEX SP8.0 (it is not cheap, and it is the best EMS on the market) and it can be adjusted based on its measurement of the muscles. I am not taking any half measures when dealing with my SCA3. I do not go to maximum EMS levels as this can cause later discomfort. However, with regular use I
Bikebug
in
Ataxia UK
5 months ago
Researchers at King’s College London are recruiting participants for a remote study on online peer support.
Researchers from King’s College London, software developers, and a group of people living with long-term conditions have co-designed a new intervention to help individuals manage low mood and depressive symptoms. KCL are recruiting adults living with any long-term physical health condition(s), including
Researchers from King’s College London, software developers, and a group of people living with long-term conditions have co-designed a new intervention to help individuals manage low mood and depressive symptoms. KCL are recruiting adults living with any long-term physical health condition(s), including
Irmmy
in
Ataxia UK
6 months ago
Initial diagnosis Ataxia but then a Brain Tumour
Once I had my MRI I was diagnosed with a Meningioma Brain Tumour which was causing my
Ataxic
Gait
. I was going to leave this group as it felt wrong as that is not what I have. Some really kind people asked me to stay and keep in touch on here. I had my surgery 3 Feb 2022.
Once I had my MRI I was diagnosed with a Meningioma Brain Tumour which was causing my
Ataxic
Gait
. I was going to leave this group as it felt wrong as that is not what I have. Some really kind people asked me to stay and keep in touch on here. I had my surgery 3 Feb 2022.
Paper2021
in
Ataxia UK
10 months ago
Care package for ataxia
I am very confused - what kind of care package do people with ataxia have - I need everyone help - I tell care manager that I have a mobility disability and they can't seem to understand - they are so used to dealing with dementia and ms and have no idea what ataxia is - it doesn't matter how many times
I am very confused - what kind of care package do people with ataxia have - I need everyone help - I tell care manager that I have a mobility disability and they can't seem to understand - they are so used to dealing with dementia and ms and have no idea what ataxia is - it doesn't matter how many times
Amynah
in
Ataxia UK
6 months ago
Do you or someone you know have a diagnosis of Autosomal Recessive Spinocerebellar Ataxia Type-17?
If you or someone you know has a genetically confirmed diagnosis of Autosomal Recessive Spinocerebellar Ataxia Type-17 (SCAR17), you could take part in a new survey about starting a family. The charity Genetic Alliance UK, of which Ataxia UK is a member, are currently sharing a consultation survey
If you or someone you know has a genetically confirmed diagnosis of Autosomal Recessive Spinocerebellar Ataxia Type-17 (SCAR17), you could take part in a new survey about starting a family. The charity Genetic Alliance UK, of which Ataxia UK is a member, are currently sharing a consultation survey
Irmmy
in
Ataxia UK
7 months ago
Vitamin deficiencies? Reversible?
HU can be so informative providing desperate people with hope that is not provided by doctors, neurologists and the medical professionals, so I mean the NHS!!!!I know this is controversial with many but unfortunately those of us who are under the London or Sheffield clinic have taken so long to get there
HU can be so informative providing desperate people with hope that is not provided by doctors, neurologists and the medical professionals, so I mean the NHS!!!!I know this is controversial with many but unfortunately those of us who are under the London or Sheffield clinic have taken so long to get there
penelope2
in
Ataxia UK
9 months ago
I have a very wobbly gait
Hello to all members of the ataxia community , I actually was not diagnosed with ataxia in a classical sense, because my brain MRI did not show any shrinking or atrophy of cerebellum, but my
gait
has all
ataxic
symptoms as I am very wobbly and my
gait
became even swaying.
Hello to all members of the ataxia community , I actually was not diagnosed with ataxia in a classical sense, because my brain MRI did not show any shrinking or atrophy of cerebellum, but my
gait
has all
ataxic
symptoms as I am very wobbly and my
gait
became even swaying.
Seagull_48
in
Ataxia UK
10 months ago
Gluten ataxia.
Just want to make it clear that having gluten ataxia and then going gluten free is not a cure. For many there is still no medication and only if you don't respond to a gluten free diet are you offered anything.A gluten free diet and a healthy eating approach along with regular exercise helps. I also
Just want to make it clear that having gluten ataxia and then going gluten free is not a cure. For many there is still no medication and only if you don't respond to a gluten free diet are you offered anything.A gluten free diet and a healthy eating approach along with regular exercise helps. I also
penelope2
in
Ataxia UK
1 year ago
Disabled
Hi all Hope you are all well. How disabled do we get with Ataxia I know it has a lot of dependencies but just wondering if Ataxia suffers need help with showers and baths etc. I’m coming to a point where I have to make some big decisions so just after any help to make the decisions a bit easier to
Hi all Hope you are all well. How disabled do we get with Ataxia I know it has a lot of dependencies but just wondering if Ataxia suffers need help with showers and baths etc. I’m coming to a point where I have to make some big decisions so just after any help to make the decisions a bit easier to
paul456
in
Ataxia UK
1 year ago
Travel Insurance
I had an mri in January which identified significant cerebellum atrophy and diagnosed with progressive cerebellar ataxia. I am going through testing to try and identify the cause but all negative so far. I would like to try to get a holiday , am using Nordic poles and have a four wheeler. I’m wondering
I had an mri in January which identified significant cerebellum atrophy and diagnosed with progressive cerebellar ataxia. I am going through testing to try and identify the cause but all negative so far. I would like to try to get a holiday , am using Nordic poles and have a four wheeler. I’m wondering
Sea_
in
Ataxia UK
1 year ago
B12 testing issues, from 2005
gait
became normal, and/or vibratory sensation that was completely absent at least in the ankles prior to therapy became easily detectable within 6 months of treatment."
gait
became normal, and/or vibratory sensation that was completely absent at least in the ankles prior to therapy became easily detectable within 6 months of treatment."
WiscGuy
in
Pernicious Anaemia Society
1 year ago
Help with a gluten free diet? Any gluten ataxia support groups?
After nearly 3 years of gluten free and dairy free diet, I would like to hear from others. Their personal stories and any support groups. There is so much information and knowledge to share with each other. Thank you.
After nearly 3 years of gluten free and dairy free diet, I would like to hear from others. Their personal stories and any support groups. There is so much information and knowledge to share with each other. Thank you.
penelope2
in
Ataxia UK
1 year ago
A shared story of SCA3
Bill Moore & his daughter Jessica Oberlin, two members of NAF, recently shared their stories of living with SCA3 as part of a feature for the Critical Path to Therapeutics for the Ataxias (CPTA). The CPTA aims to optimize clinical trials for inherited Ataxias. Impact stories like theirs can help researchers
Bill Moore & his daughter Jessica Oberlin, two members of NAF, recently shared their stories of living with SCA3 as part of a feature for the Critical Path to Therapeutics for the Ataxias (CPTA). The CPTA aims to optimize clinical trials for inherited Ataxias. Impact stories like theirs can help researchers
wobblybee
in
Ataxia UK
2 years ago
Sheffield and autoimmune treatment
Hi all, is there anyone with gluten ataxia?Please can you say if you are seeing Professor Hadjivassiliou at Sheffield. And receiving treatment and medication for autoimmunity. I am interested to know just how many receive treatment other than going "gluten free". I have already seen the Professor who
Hi all, is there anyone with gluten ataxia?Please can you say if you are seeing Professor Hadjivassiliou at Sheffield. And receiving treatment and medication for autoimmunity. I am interested to know just how many receive treatment other than going "gluten free". I have already seen the Professor who
penelope2
in
Ataxia UK
2 years ago
by sca3
Friends, I want to ask you a question. After consulting your previous replies and information, I saw trehalose. I tried to take trehalose orally for nearly a week and found that I did have gastrointestinal discomfort, always farting and diarrhea. I want to know if there is any solution to this
Friends, I want to ask you a question. After consulting your previous replies and information, I saw trehalose. I tried to take trehalose orally for nearly a week and found that I did have gastrointestinal discomfort, always farting and diarrhea. I want to know if there is any solution to this
xiaoduoyu
in
Ataxia UK
2 years ago
Don't doctor's ever examine people anymore ?
I'm guessing I'm not the only one here, it just seems since Covid,any doctor you ever get to see (even my neurologist who is an Ataxia expert and very thorough) only want to sit down and ask questions,while filling in some form. No one lays hands anymore - how do they expect to diagnose problems
I'm guessing I'm not the only one here, it just seems since Covid,any doctor you ever get to see (even my neurologist who is an Ataxia expert and very thorough) only want to sit down and ask questions,while filling in some form. No one lays hands anymore - how do they expect to diagnose problems
discodave66
in
Ataxia UK
2 years ago
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