Gluten Ataxia - What You Need to Know About This Neurological Condition Ep. 215

If you’ve been dealing with slurred speech, balance problems, hand tremors, or other strange neurological symptoms and have been told it’s just stress or anxiety, this episode is for you. We’re diving into gluten ataxia, a rare autoimmune condition triggered by gluten that affects the brain, not the gut.

You’ll learn

• What gluten ataxia is and how it’s different from typical celiac disease
• The key symptoms (that often get brushed off or misdiagnosed)
• What to ask your doctor for (including specific tests like TG6 antibodies)
• What to expect in terms of recovery
• How to support your healing if you’ve been affected

This episode was inspired by a listener named Kelly, who has been dealing with this for years without clear answers.

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Chapters

• 0:48 Introducing Gluten Ataxia
• 1:40 Common Symptoms and Misdiagnoses
• 4:32 Testing and Getting Proper Diagnosis
• 5:52 Managing Flare-ups and Recovery
• 7:26 Treatment, Healing, and Taking Action
• 10:06 Final Thoughts and Listener Encouragement

Transcript

Speaker 1: 0:24

If you've been struggling with balance issues or slurred speech or any strange neurological issues and your doctor has told you that it's just stress, then this episode could be a game changer for you, because, the thing is, these problems may not be caused by stress or anxiety. Gluten ataxia is a rare neurological condition that is triggered by gluten consumption a rare neurological condition that is triggered by gluten consumption. Now I wanted to share this episode today because one of my listeners, kelly, reached out to me and shared that she has been dealing with this for a very, very long time and she has struggled to get answers. So she wanted me to share some more information, not only with her, but with all of you as well, because the more that we talk about these things and the more that we share, the more that you know we may be able to help other people as well. Instead of attacking the small intestine like we would see normally in celiac disease, what happens with gluten ataxia is it targets the brain, in particular, the part that is important for balance and coordination. Now, it can occur with or without gut symptoms or problems, and that is why it often gets misdiagnosed or undiagnosed. So how common is gluten attacks here? It actually affects about six percent of people with celiac disease, so it is quite a number of people when we think about it. Now, gluten ataxia may be responsible for about 20% of people that have ataxia without it being diagnosed as gluten ataxia. Now, this is really important for people that have been diagnosed with an unknown cause of ataxia because it could be related to gluten, and then we'll talk about how it can help those people and what they need to do to be able to, you know, look after their health and deal with this issue.

Speaker 1: 2:21

So the common symptoms of gluten ataxia are poor balance or unsteady walking, slurred or slow speech, hand tremors, coordination issues, so things like, you know, struggling with handwriting or even clumsiness, blurred vision or difficulty focusing, brain fog and even fatigue. Now these symptoms may worsen or come on gradually over time if not treated correctly. Now, what makes this different to the typical celiac disease? Now, it may not affect the gut, there may not be any issue at all with the villi and it may not present the same as what it does with typical celiac disease. Therefore, people that get tested, they may come back with their results from their endoscopy and it'd be completely fine and not show any signs of celiac disease, and this is a key reason why so many people go undiagnosed for so many years.

Speaker 1: 3:17

Now, when we talk about people that get misdiagnosed from gluten ataxia and they get diagnosed with something else, there's a number of things that people can be misdiagnosed with, and these include idiopathic ataxia, which is basically they have no known cause. They don't know what is causing it. Multiple sclerosis, early onset Parkinson's disease, peripheral neuropathy, chronic fatigue syndrome, functional neurological disorder, anxiety or even psychosomatic symptoms. Now, when women are diagnosed with the last one, many doctors believe it's in their head, especially if they already have a celiac disease diagnosis. They put it down to anxiety and they put it down to being worried and over-analyzing things.

Speaker 1: 4:03

Now, if you want to get tested for this, there's a number of things that you need to be tested for. So you need to go along to your doctor and say that you believe that you may have gluten ataxia or you have unexplained neurological symptoms and request a full celiac antibody panel so that would be a celiac serology test and ask for an AGA test as well. So this is really important for neurological forms, even though you know it's outdated for gut diagnosis, ask about TG6, transglutamine 6 antibodies, and this is the marker most strongly associated with neurological gluten damage. Now there is limited testing for this globally and you may actually be referred to a neurologist for testing for this. You may not be able to just get it done through your standard doctor, so you may not be able to just go in request the blood test. You may have to ask for a referral to go and speak to a specialist in the form of a neurologist and you may also need to ask for a brain MRI. And I would go in and I would say to them I'm concerned about gluten ataxia, which is a neurological autoimmune condition related to celiac disease. And I would say to them I'm concerned about gluten ataxia, which is a neurological autoimmune condition related to celiac disease. I'd like to be screened, including TG6 if possible.

Speaker 1: 5:24

Now let's talk about what happens if you get accidentally gluten. So let's just say you've already got a celiac disease diagnosis and you accidentally get gluten. So if this happens and you've got gluten ataxia, you may suffer with things like feeling unbalanced, you know, having tremors of the hands trying to do things and your hands are shaky, slurring your speech. You know, sometimes you can't get your words out, things don't sound right and this can occur within you know, a couple of hours to a couple of days, so you'll find that these things don't go away quickly. They may linger for weeks or even months, depending on your sensitivity and your existing damage. Repeated exposure can lead to permanent progression. So for many people they need to get onto this very, very quickly, but for many people it can take a very long time to get answers.

Speaker 1: 6:15

Now, recovery takes time, often unfortunately longer than gut-based symptoms. So what can you do? If you do have a flare-up, then I would recommend focusing on an anti-inflammatory diet. Adding in things like turmeric, flaxseed. Things like that can really help Definitely lower your stress and rest as much as possible. Goes without saying. Like anytime we get accidentally gluten, rest is a big one. If you are then feeling up to it, very gentle exercise and movement can start to help shift things along as well. So only if it feels safe to do so, that can be supportive as well and really focusing on nutrient dense, really nourishing foods for your body.

Speaker 1: 6:59

Now let's talk about treatment and the long-term outlook. For those of you that have already got gluten ataxia, or if you're thinking that this might be something that you are facing, it is important to 100% eat gluten-free. Like goes without saying, gluten is what's causing the problem. So you need to be very, very strict with your diet, with your cross-contact, everything, as much Healthy, whole foods as possible. If you live somewhere where 20 parts per million are allowed, I would be so, so strict with that. I would be avoiding as much packaged food as possible and sticking to as much whole foods as possible and seeing what a difference that makes in your wellness and your physical body and seeing how you relate to that.

Speaker 1: 7:49

If you do find that you have symptoms, I would be tracking those to a T. I would be writing down everything looking at when it happens, what you've eaten, where you've been, what could be causing it, so that you can make sure you avoid it in the future and really keeping on top of things Now. For some people it takes six months to feel better, for some people it takes a couple of years and for some it takes even longer. The quicker you get your diet under control, the quicker you'll feel better and the less times you accidentally get gluten, obviously you're going to heal much faster as well, and the earlier you do catch this, the less likely you have of having permanent damage. So it's super important If this is relating, if this is any of this is hitting home, please go and get checked out, look into it further, like I said, track what's going on for you, write down your symptoms, how long things are occurring, when it's happening and what's going on for you, so that when you do go see a doctor or a specialist, you've got that information to share and you're not just basing it on you know, oh, this has happened a couple of times or whatever.

Speaker 1: 8:54

You've got exact details of when it happened, what you'd eaten and all of the things that kind of tie in with that information is really, really supportive when you go see a specialist and when you go to see your doctor. Now my final words of encouragement if any of this is resonating, please know that it is not in your head. This is not you talking yourself into something or overreacting. You know your own body, you know your symptoms, you know how you react. So please don't let it slide. Go find out more about this from your doctor, talk to a specialist, get answers, because you deserve to feel amazing and, you know, if we know that so many people are dealing with this and are undiagnosed, you could be one of them. So isn't it worth finding answers and getting to the bottom of it? And the thing is, getting a diagnosis and going strictly gluten-free can be absolutely life-changing, and I would highly highly recommend, if you haven't got a celiac disease diagnosis but these symptoms are making sense to you and they would highly highly recommend if you haven't got a celiac disease diagnosis but these symptoms are making sense to you and they sound like you know this could be what's going on, then 100% definitely go and get tested. And this is not about overreacting. This is about being proactive.

Speaker 1: 10:09

So a massive shout out to Kelly for writing to me and requesting this episode. I truly hope that it has helped someone out there that's listening to this. If that's you, I would love to hear from you. If you are listening to the podcast, please head to the healthy celiac on Instagram and send me a message. Just let me know your insights, what you're going to do about it, what your takeaways are or, if you're on YouTube, make sure you comment down below and share what you got from this video. So thank you so much for listening and I look forward to talking with you again on the next episode. So have a great week and I'll talk to you then Take care, bye.