Hello friends does anyone know about the antibodies TG6 for gluten Ataxia I have been told I have these but I was diagnosed with idiopathic cerebella ataxia 2 years ago I have received results from Sheffield ataxia centre but I have a tumor in the cerebellum into brain stem not sure what this means any help from you wise and wonderful folks would be appreciated. Thank you 🙏
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LEE
Hope you are doing Ok Lee.I also have antibodies for gluten and have been advice to commence a gluten free diet. This diagnosis like yourself was made a Sheffield Ataxia Centre. I have a gene mutation which causes cerebral Ataxia, I suppose more than one cause can result in similar symptoms.
Good luck I hope you find some answers.
Pauline.
Hi Pauline thank you for your reply I hope you doing well. The TG6 gluten news threw me out a bit I was diagnosed with cerebella ataxia because of some shrinkage of the left cerebellum due to a tumor that was found its inoperable and occupies a good chunk of it.this was found in 2021 but I now know what ataxia is and been having symptoms for over 15 years. Well yesterday I had news that it could be SCA35 gluten ataxia this put the cat amongst the pigeons 🙃 so off to Sheffield Hallam next week for MRI and spine spectroscopy.
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Lee
Hope you received the answers you were looking for at SheffieldPauline
Hello Pauline everything back on for June 22nd bloods scans etc so just holding on as usual. My usual neurologist I see for the sunct syndrome is still trying to dope me me up with more medication but he’s on a losing battle with me 🤨 it’s hard enough with my normal symptoms never mind making me feel worse. Thank you for your concern Pauline
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Lee
🙂 You’re in good hands at Sheffield when it comes to problems with gluten.
n.neurology.org/content/92/...
Hi wobblybee thank you for reply and info i hope you are well I went straight on and read it and the information is similar to what I’ve been reading on malacards that also gives detailed info on TG6 mutation. I have spoken with my Gp who informed me that the marker for this antibody is very high so I’m having another blood test to confirm. But it’s starting to fall into place my symptoms I’d been having for years along with the tumor the neurological team forgot to tell me I had🙃🤨 thanks again
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Lee
And yes Sheffield Hallam are unbelievable I’m so thankful to them for being so thorough 👍🏻
Lee
Hi, I believe TG6 is a marker gene for susceptibility to having a reaction to gluten and it could be coeliac disease or non coeliac gluten sensitivity. NCGS can lead to the autoimmune gluten sensitivity which will over time cause atrophy of the cerebellum, the balance and coordination centre in the brain. I think this is because unlike CD, NCGS can in some people have little or no side effects. Also a lot of doctors and neurologists do not recognise it. There are not many NHS hospital labs that can test for TG6 so all in all it can a long time to pick this up. Considering that some coeliacs have negative tests then it can be a very confusing picture. I have gluten ataxia, am also dairy free, eat soy, rice and corn in only small amounts following the results of a private blood test. I was desperate to have answers and the NHS wheels turn so slowly and then you have to actually see the right person. For me it was fundamental to try and stop the course of ataxia. Thank goodness it has stabilised now, my hands work well and no tremors for nearly 3 years. I have a strict gluten free diet, do lots of home cooking and am really careful with what I eat.After having said all this I'm sure it is possible that someone could have more than one type of ataxia.
Sheffield ataxia clinic is the best for autoimmune ataxias. Google Professor Marios Hadjivassiliou and there is lots of research he has led on GA.
Hoping you have answers soon. Good luck.
Hello Penelope2 thank you for your reply. You are on the money I had never heard of TG6 or gluten ataxia before I received my letter from Sheffield Hallam. I have antibodies for TG6 so I’m having a second round of blood tests and MRI spectroscopy on spine and cerebella I already have cerebella ataxia due to a tumor so this has thrown a spanner in the works. Been told not to change diet yet until all tests are in. I’ve been having what I now know as ataxia type symptoms for over 15 years until two years ago started falling over and lots other things that was when tumor was found I’m now in a wheelchair to go out for my safety my left arm does what it wants oh so much to list. I hope you continue to stay well
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Lee
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