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 take lots of high dose supplements.
Use it or lose they say, it can stop the progression of ataxia, but if like me you have eaten gluten all your life, most of us do, then it still causes atrophy to the cerebellum. This is why early diagnosis is so important!
It doesn't help that many doctors and neurologists don't believe there is such a thing as non coeliac gluten sensitivity.
Good luck all.
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penelope2
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I was diagnosed with Gluten Ataxia too late as the doctors at London Ataxia Centre concentrate mainly on genetic ataxia’s which they assumed was me as all tests were negative, yet as with many autoimmune diseases they progress rapidly, so within 3 years I went from normal to housebound wheelchair user.. Luckily my GP told me that on the NHS you are entitled to two opinions and London referred me to Sheffield Ataxia Centre whom concentrate on autoimmune ataxia’s. They do tests that London don’t do, like stomach biopsy and some further blood tests. They diagnosed gluten ataxia and as well as a gluten free diet I am on medication and progress has halted plus the latest MRI has shown a small improvement. Btw London did one MRI in 5 years and I have 2-4 a year in Sheffield, I wish I had gotten there sooner but with Covid everything was put back
Yes I had a similar experience to you, UCLH despite various tests did not agree with me that the ataxia was autoimmune. During a consultation at Queens Square, it was difficult but I asked them to refer me to Sheffield, which they did. Time was of the essence as you say and iknew this. Tests at Sheffield were not conclusive as I had been gluten-free for 2 years by then. Professor Hadjivassiliou understood my reasons for not eating gluten again so diagnosed GA through history and symptoms as there were no antibodies present.
He also told me that lots of patients with ataxia self diagnose, this should not be happening, it is out of desperation people do this.
The local neurologist that referred me initially to UCLH did not believe in GA despite having a coeliac daughter!
It is this sort of thinking that needs greatly improving. In my opinion it is almost negligence and Ataxia UK is trying to turn this around with the Ataxia Awareness Day.
How many people could have had a diagnosis earlier?
I feel for you and hope you are receiving the treatment that you deserve now.
Almost exactly the same story! It is just too late for me as I am housebound and in the wheelchair now despite being young in my 40s. I would urge anyone to persist quickly, so they don’t end up like me.
I knew it was autoimmune from day one, but London would not believe me and kept telling me it would be genetic, which I didn’t believe.
I wish I had been able to get to Sheffield sooner then I wouldn’t be like this. They are looking after me now though And touch wood, it doesn’t seem to be getting worse.
Neurologists, at local level and specialist ataxia centres will consider family history for all autoimmune conditions, which can run in families. Autoimmune conditions tend to run in families and I am not talking hereditary ataxias here. Rheumatoid Arthritis, diabetes type 1 etc. So family history is important. Both my parents had autoimmune conditions but not ataxia.Tests run at different hospital labs vary.
Sheffield runs tests that are not available anywhere else and I expect likewise with UCLH.
I am not a doctor so don't know exactly what blood tests are run or what ones will be the markers for autoimmune and inflammation. I have had a full neuro screen of blood tests done several times, looking for antibodies. With varying results at different labs. Explain that one!!!
Also the parameters for normal and abnormal can vary. Eg therapists will have much smaller parameters than the NHS.
It is a minefield out there, yet another one!
You can get access to your medical notes including tests but have to go through a process first.
The whole business of diagnosis is very difficult so no wonder why it takes so long for a diagnosis of ataxia, this is why I believe we need to empower ourselves more, go with our gut instinct what is right for us and not rely on everything that doctors tell us. When appropriate question doctors and neurologists.
Hello penelope2 i hope you are well I was at Sheffield last week for consultation after some scans and blood tests. My scans are inconclusive? My blood test in March shown TG6 antibodies so further blood tests have been done and a 6 week wait for them to come back. The MRS scan showed some anomalies which need further investigation after bloodwork. Genomic blood tests are also being carried out which will take no less than 12 months. I’m to stay on a normal diet at moment but like you I’m eager to find out what is going on as symptoms are not getting better in fact to date I’m worse than I was in March on my first visit to Sheffield. I have a tumor in the CPA and that’s causing some discussions
Hello. I have a hereditary spino cerebellar ataxia, type 6. Diagnosed 10 years ago. Recently troubled by incidents of bloating and flatulence I went gluten free. So far, so good. I can well believe that there is such a thing as non coeliac gluten sensitivity. Further, I postulate that it can strike anyone, at any time.......
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