TG6 and gluten ataxia

[cyclist49]

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

[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 in reply to Rezzy3]

Thanks Rezzy3

[penelope2 in reply to cyclist49]

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!