I recently met with Dr. Val Vaartnou from the Canadian Celiac Disease Association to discuss the organization’s support of current research in the area of gluten sensitivity. During our chat, the concept of “gluten ataxia” was brought up, which as a Celiac patient myself, greatly peaked my interest. In this blog post, I hope to raise awareness for this nuanced issue with the eventual goal of being able to conduct meaningful research in the future.
What is Gluten Ataxia?
When we think of gluten sensitivity, we do not commonly associate it with neurological illnesses, but rather, changes in weight, tiredness, and gastrointestinal discomfort. But recent studies have shown that those with gluten sensitivity/autoimmune illnesses may also be suffering from gluten ataxia, which is where the digestion of gluten produces antibodies that attack the cerebellum, the part of the brain that controls balance, movement, and speech. Thus, for individuals with this condition, eating gluten directly corresponds to neurological damage, affecting one’s speech, balance and posture. Shockingly, gluten ataxia accounts for “up to 40% of cases of idiopathic sporadic ataxia” which is the spontaneous loss of specific bodily movements and behaviours. Since ingesting gluten creates these antibodies that disrupt the cerebellum’s functionality, prolonged exposure to gluten can lead to permanent damage.
As symptoms progress, some people will talk as if they are drunk, and others will lose control over their eye movements. Some research has even shown that people who suffer from gluten ataxia will also show signs of cerebellar atrophy, which is the shrinkage of the cerebellum. Studies even show that 60% of those diagnosed with gluten ataxia have shown cerebellar atrophy.
Why should you be worried about this condition?
The real issue in treating this issue is the fact that it is not widely known, or accepted. Gluten ataxia is a relatively new discovery, and has sadly not been accepted by all doctors around Canada and beyond. This makes diagnosing this condition extremely difficult, especially for those who might be suffering from Celiac disease as well, and are undiagnosed. Over 83% of people are undiagnosed or misdiagnosed for Celiac, a statistic that does not shock me given the limited exposure of gastrointestinal research shared with the general public. You, the reader, might be suffering from Celiac Disease and you wouldn’t know it because you’ve not been diagnosed, just as you wouldnt know if you are suffering from gluten ataxia, until it is too late! In the case of gluten ataxia, the symptoms occur progressively. Therefore, it is important that if you experience any kind of gastrointestinal irritation or pain you speak with your doctor, and do some research on your own to see if you could potentially have any kind of ataxia.
For those with gluten ataxia, the solution is rather simple: adopt a completely gluten-free diet! Obviously this sounds like an easy fix, but is it really? The reality is that it is immensely difficult to have a fully “gluten-free” diet as cross-contamination and mislabelling quite often result in trace amounts of gluten entering the foods we eat. While this might be the case, organizations like the Canadian Celiac Association are working tirelessly to ensure that gluten-free foods are actually safe for Celiac patients, and those with any level of sensitivity. Anecdotal evidence has suggested that after adopting a strict gluten-free diet, the symptoms of gluten ataxia declined. Thus, if we work hard to ensure that gluten-free foods are readily accessible, undiagnosed individuals will be able to live healthy lives without fear of developing the above symptoms.
What is currently being done to solve this issue?
Many research institutions across Canada are beginning to delve deep into the issue of gastrointestinal complications as a result of gluten intake. A leading example of this type of research is led by Dr. Elena Verdu at McMaster University’s Farncombe Family Digestive Health Research Institute. Her team of researchers are looking into specific microbiota-based therapies in the gut, which use pathological organisms (pathobionts) to reduce the response to gluten in affected individuals, using rat models to test the viability of this nuanced solution. More research is slowly being conducted to show the connection between microorganisms in the small intestines and the brain, which will hopefully lead to new and fascinating improvements in the field of medicine.
Personal Involvement
As a student who is passionate about the complex world of immunology and global health, I really want to be apart of the new generation of researchers to bring illnesses like these to the forefront of international concern. Having been diagnosed with Celiac Disease myself, and knowing that others around me may be suffering from this disease without realizing it deeply scares me. This is why I want to take action to support organizations like the Canadian Celiac Association, a registered charity, and one day, be in the capacity to conduct meaningful medical research myself.
I hope this blog post has inspired you to learn more about the complex connection between gluten intake and medical complications. Learning about conditions like gluten ataxia is important because it may affect you, or those around you in the future. I urge you to check out the links below to further your understanding of gluten-related medical complications so that we can all learn together and find a solution.
As always, thank you for checking out my blog!
Is there a way to get in touch with this Dr? I live in Vancouver and I’m certain I have gluten ataxia as I have undefined ataxia that I have been able to link to diet and cross contamination. I cannot get any Dr to even consider this as a possibility.
My son was diagnosed with Ataxia in Decmeber 2018. After extensive tests and a month-long stay in hospital, the Neuro doctors said that his Ataxia may be related to Celiac disease. However a subsequent endoscopy came back clear. He was recovering slowly but his condition has been deteriorating since May and last week (July 2019) he was back in hospital.
The Neuro doctors have once again hinted that Celiac may be a cause. My question is, if he is suffering from Celiac Ataxia, would he have any gastric symptoms?
I can’t believe this wouldn’t be accepted by all doctors.Certainly makes sense.
My daughter suffered with headaches as a child but unfortunately wasn’t diagnosis with CD until in her 40’s it has to do something to the brain.
Now my husband started having balance problems & three different diagnosis, one being Ataxia but no real proof because all MRI’s are normal. So his Celiac blood test is negative
but I’m wondering if the test is always 100% correct?
Celiac must come from his side because our daughter has it & so does my husband’s niece on his side.
So the only way to prove that this might be a possible cause is to follow the GF Diet is that correct?
Thank you, Cathy