GlutenAtaxia

[Sheffield6]

I have gluten ataxia however after three years on the gluten free diet I continue to get worse .

The dietician can see I'm sticking to the gluten-free diet .

What else can I be ?

[Cooper27]

Have they retested your antibodies to make sure you're in normal range now?

There are a few possibilities to rule out. For one, the gluten free logo on foods, should mean that they contain <20ppm of gluten. They set this limit, because it would accommodate 85% of coeliacs, but that means there are 15% out there for whom gluten free foods contain too much gluten. You could try spending a month on whole foods (avoiding all gluten free alternatives) to see if you have any improvement.

Another thing to rule out, is whether cross contamination could be happening in a place you're not aware of. I presume you had a kitchen clear out when you were diagnosed? Did you remove oats completely?

One final thought is: are you drinking gluten free beers or using Juvela bread/flour mixes at all?

[Hidden]

I agree with Cooper. There is a lot of hidden gluten in 'gluten free'. It's also very easy for things to get cross contaminated if you share kitchen space with others, e.g. oven, toasters, knives/forks, plates. If you are also following the Coeliac UK food recommendations, you are definitely being glutened. On the basis that all other nerve/health conditions have been ruled out, you need to go mega disciplined on avoiding all commercial gf foods, but mega stringent on avoiding cross-contamination, and perhaps avoiding eating out/any supposed gluten free takeway foods for a few months and see what the difference is.

[penelope2]

Hi there, know it's been a long time since your post.I too have gluten ataxia, self diagnosed, and Sheffirld clinics blood tests didn't pick up any antibodies as I had been gf for 2 years.

Following a private blood test for cross reactive foods that showed up dairy, rice (in almost all gf foods) and buckwheat.

I also limit soy, corn and millet. Thankfully not gf oats.

This is a very restrictive diet! The ataxia symptoms have stabilised but I think irreparable damage done to the cerebellum so probably as good as it gets for me.

If you are still struggling then consider other foods, paying for a private test is a quick solution. Search the BANT website.

My experience is doctors, neurologists etc do not believe in gluten ataxia. So if you are seeing Professor Marios at Sheffield he is the best!

Also I take a lot of supplements, again my choice but I think it helps, gods knows we need all the help we can get.

There are others that have gluten ataxia but you are only the second person I have heard of.

Take care.

[jdine1969]

Plants have lots of chemical poisons. These toxic chemical poisons attack our immune system including the gut barrier. It's more than lectins and oxalates. Some vegetables have over 100 different poisons. Stop eating plants if you can't handle it. Also, stop eating carbs if you have a sugar addiction...its like telling an alcoholic to only have 1 shot per day. Carbs are not necessary. fat and protein are necessary. At least take a break and truly heal before reintroducing toxic plant foods. 1 at a time until you are triggered. better yet, avoid forever. Eat meat, fish, chicken, eggs, and butter. If you can then tolerate dairy, have some cheese, yogurt, milk, and kefir. With dairy, probiotic is best.