Gluten ataxia

[Tazwaz]

I've recently been told by prof at Sheffield I've probably hot gluten ataxia I'm looking for what I can eat and drink and what i carnt much help would be appreciated

[Cupcake12345]

I’m also gluten free on the advice of Professor Hadjivassiliou, it’s easier to say what you can’t eat, if you check labels or ask at restaurants there’s normally a good choice, last night I ate croquettes by checking the label as these were not marked gluten free! Generally avoid bread crumb items, bread , pasta.

[Telegraphist]

Today's zoom session on Gluten Ataxia, from AtaxiaUK starts at 11am......

[wobblybee]

🤔If this is still to be confirmed..and turns out to be positive

The Sheffield Ataxia Centre will probably give you detailed information about the Gluten Diet.

A diagnosis of Gluten Ataxia means rigidly sticking to the diet, being careful about cross contamination when preparing food (using a separate toaster, utensils etc)..and being aware that even some medications and beauty products can be tainted with gluten by products.

coeliac.org.uk/information-...

[Tazwaz in reply to wobblybee]

He already said I'm positive going g f does it improve your symtoms

[wobblybee in reply to Tazwaz]

🙂 I tested negative myself but…I’ve seen lots of posts from people who are diagnosed with Gluten Ataxia, and I have a friend who must stick to a rigid GF diet.

Most people comment they feel better for following the diet, ataxia symptoms aren’t triggered…Cerebellar Ataxia doesn’t worsen as long as the diet is continuous..it’s a lifestyle.

But..I’ve seen a few people say the diet has made no difference. It could be that these people haven’t stuck rigidly to the diet🤔

But..it isn’t a quick fix..It could take 6mths to notice any benefit.

[Cupcake12345 in reply to wobblybee]

Not all people respond to a gluten free diet and some are put on medication too, my results were negative but the bloods showed high GAD antibodies that are reducing with diet and medication (see other posts that talk about this). My Ataxia is now stable. A gluten free diet takes 12-18 months to see a difference.

[wobblybee in reply to Cupcake12345]

🤔Are you receiving Immunotherapy

link.springer.com/article/1...

[Cupcake12345 in reply to wobblybee]

Yes

[ReluctantShopper in reply to wobblybee]

Hi do you know if you have been gluten free for several months then you lapse and have a mince pie does the clock revert back so you need to possibly need to do another 6 months before noticing any benefit ?

Also do you know why the gluten ataxia testing is only available in Sheffield as I don;t understand why they don;t routinely test anyone who goes to the London clinic who have not have a genetic diagnosis ?

Thanks

Mia

[wobblybee in reply to ReluctantShopper]

🤔 ‘Noticing any benefit’…in ataxia symptoms, is likely to be variable anyway re the length of time it takes person to person. But..’falling off the wagon’…will undoubtably make it harder to just as rigid about a gluten free diet. The main thing is..to start again if you have a diagnosis of Gluten Ataxia.

🤔 As far as I’m aware..any Neurologist can request the test for Gluten Ataxia, it isn’t restricted to Sheffield Ataxia Centre. But…only specific types are routinely tested for via the NHS...after that testing will be at the Neurologists discretion. I had to request it separately at Newcastle,

[ReluctantShopper in reply to wobblybee]

Thanks - my husband has his next appointment at London Ataxia Centre in December so knowing that his neurologist can request a test is really helpful. He is doing a Anti-GAD test privately as well before the appointment just to tick another thing off the list.

[cyclist49 in reply to wobblybee]

I was diagnosed with Idiopathic Cerebellar Ataxia in 2018 and had all the usual tests which proved negative . My neurologist 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

[SueMillman Partner Ataxia UK]

Coeliac UK have a useful app that tells you what foods have gluten in them coeliac.org.uk/information-...

[Tazwaz in reply to SueMillman]

This may sound silly but I dont est much chocolate but I do like maynards wine gums and miget gems I've been reading diffrent sorts some say they are free from gluten some say not this is a mone field

[KiwiBob in reply to Tazwaz]

Hi, Sainsbury's own wine gums are gluten free.

[penelope2]

Hi. Going gluten free can be overwhelming. Don't fall into the trap.of going g down the supermarket aisle "free from" and buying lots of unhealthy sugar loaded food. There is a new gluten ataxia and autoimmune support group and they are talking about different foods and meals at the next meeting. Might be interesting for you. Check out Ataxia UKs website for login details.Or Coealic UK website is very informative too.

Good luck.