TG6 and gluten ataxia: I was diagnosed with... - Ataxia UK

Ataxia UK

4,090 members4,663 posts

TG6 and gluten ataxia

cyclist49 profile image
3 Replies

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 or gluten intolerance . I am aware that it is important that a gluten free diet must be very strict, and as I am at the beginning of this journey I would be very interested to hear from other people who have had a positive TG6 test and their experience of undertaking a gluten free diet either positive or negative

Written by
cyclist49 profile image
cyclist49
To view profiles and participate in discussions please or .
Read more about...
3 Replies
Rezzy3 profile image
Rezzy3

I’ve been gluten free for about 4 years. I was postive like yourself but also found out later I have SCA6 I think.

Didn’t think the gluten free diet helped until I had a moment of weakness and grabbed a slice of pizza and fried chicken. Felt like I was drunk for three days.

Gluten free diet, exercise, acupuncture and some mindfulness and I was able to lose the walking stick. I just did my yard work the other day. Cut grass, edging and blowing scraps. It helps a ton and it doesn’t hurt until you crave one of your favorite pasta meals.

Good luck to you!

cyclist49 profile image
cyclist49 in reply toRezzy3

Thanks Rezzy3

penelope2 profile image
penelope2 in reply tocyclist49

There are many symptoms of gluten ataxia including some of these.Migraines and headaches. Brain fog. Walking and balance problems. Not being able to think straight and multitasking. Slurry speech. We are all different and are effected in different ways. The biggie that most people think of is digestive issues but some won't have these. Fatigue worse than tiredness is another one.

I would advise you if you have been told to do so definitely go on a gluten free diet as the longer you continue to eat gluten the more damage is done to the cerebellum. Do research and it is then up to you. To be told so early on in the diagnosis is very lucky, not many are and end up with life changing disabilities. Your neurologist is clued up, not many are!

Not what you're looking for?

You may also like...

TG6 gluten Ataxia

Hello friends does anyone know about the antibodies TG6 for gluten Ataxia I have been told I have...
Guardsman68 profile image

Ataxia, stomach problems and lycopene

Although i tested negative for gluten ataxia (I have "idiopathic" SCA), I am considering starting a...
Iain_100 profile image

Gluten ataxia.

Just want to make it clear that having gluten ataxia and then going gluten free is not a cure. For...
penelope2 profile image

Gluten ataxia

Hi all I’m just wondering how you are diagnosed as having gluten ataxia, I currently have coeliac...

Improving diagnosis, and management of Gluten Ataxia.

🙂People in the UK Improving diagnosis and management of Gluten ataxia Ataxia UK, Coeliac UK,...
wobblybee profile image

Moderation team

See all
HarryB profile image
HarryBAdministrator
VE93 profile image
VE93Administrator
WendyBom profile image
WendyBomModerator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.