What To Know about Gluten Ataxia

Gluten ataxia (GA) is an autoimmune disorder that causes neurological (nervous system) effects when you eat gluten. It's typically a progressive disease that worsens with time.

Ataxia is poor muscle control and coordination. You may experience changes to the way you walk, speak, and your ability to see. Most people with gluten ataxia don’t have gastrointestinal (GI) symptoms.

Up to 6% of the general population may have gluten ataxia. Your healthcare provider may recommend diagnostic testing if you experience issues with coordination or slurred speech after eating gluten.

If your symptoms improve after removing gluten from your diet, they could be attributed to gluten. The best way to manage GA is with a strict gluten-free diet. Seek out gluten-free alternatives and read all food labels closely to ensure the product is appropriate. GA may cause irreversible brain changes, movement disorders, and muscle conditions.

Gluten Ataxia Symptoms

Gluten ataxia symptoms usually start slowly and progressively get worse with time. One study found that the average age of symptom onset was 53 years old.

Neurological Symptoms

Gluten ataxia may be a symptom of celiac disease, another chronic (long-term) autoimmune disorder caused by an immune reaction to eating gluten. However, celiac disease primarily causes digestive symptoms.

Gluten ataxia primarily causes neurological symptoms that can dramatically affect your quality of life. Ataxia usually involves the part of your brain that controls movement. This could make it harder to control your movement and cause balance issues.

Possible neurological symptoms include:

• Slurred speech 
• Hoarse voice
• Rapid back-and-forth eye movement
• Muscle weakness
• Overactive reflexes
• Muscle tightness
• Difficulty with fine motor movements (e.g., writing)

You could have quick, sudden muscle twitches. It’s not uncommon to feel these rhythmic twitches on the roof of your mouth. Some people also notice chaotic, involuntary eye movements.

Gastrointestinal Symptoms

Some people may experience gastrointestinal (GI) symptoms, but it’s less common. If you do experience GI symptoms, they may include:

• Diarrhea
• Bloating
• Weight loss

Causes

Gluten ataxia is an autoimmune condition triggered when you eat gluten. Your overactive immune system becomes sensitive to gluten, and your body produces antibodies that mistakenly attack your health cells instead of foreign pathogens. This leads to brain damage and neurological symptoms.

Multiple factors may cause gluten ataxia. A deficiency in vitamin E or B1 can trigger it, as can a small intestine that has difficulty digesting nutrients. More research is needed to determine the underlying causes of gluten ataxia.

Risk Factors

Several risk factors are associated with gluten ataxia. You’re more likely to have gluten ataxia if you have celiac disease. The risk of ataxia is highest the first year after you’ve been diagnosed with celiac disease.

There may also be a genetic link. If someone in your family has gluten ataxia, you may have a higher risk of developing it. Researchers believe there may be some link between gluten-related disease and the HLA DQ2 gene, one of the two main celiac disease genes.

How Is Gluten Ataxia Diagnosed? 

After taking your medical history, your healthcare provider may recommend additional diagnostic testing. Gluten ataxia tests include:

• Blood tests: Check for antibodies that indicate gluten sensitivity
• Magnetic resonance imaging (MRI) scan: An imaging test that checks for tissue loss in your brain

Your healthcare provider may recommend a gluten-free diet to determine if diet triggers your symptoms. If your symptoms improve or stabilize when you avoid gluten, this may indicate a gluten intolerance.

You may be asked to self-monitor your symptoms using a standardized scale. This will help your healthcare provider understand the severity of your symptoms. It will also help you track your symptoms over time. Gluten ataxia symptoms typically worsen with time, so it’s important to monitor them.

Treatment

Gluten is the main trigger for the symptoms associated with gluten ataxia, so, like celiac disease, the primary treatment for gluten ataxia is a gluten-free diet.

Try to remain gluten-free for an entire year to see results. Your symptoms may persist with a gluten-free diet, but you might see significant improvement.

No medications or other therapies have been approved to treat gluten ataxia.

Prevention

Adhering to a strict gluten-free diet may reduce the severity of your gluten ataxia symptoms. Gluten is a protein that naturally occurs in wheat, barley, and rye. It may also be found in oats and other grains that come in contact with or are made from wheat, barley, or rye. This includes bread, pasta, and dough.

Focus on whole foods like:

• Fruits and vegetables
• Rice and potatoes
• Nuts
• Beans
• Dairy products
• Fish and meats
  

There are also many gluten-free options, including breads, flours, and snacks. Read all your food labels to make sure they are labeled “gluten-free. Gluten can hide in products like seasonings, beer, soups, and processed meat. It might also be in products like lip balm, supplements, dental products, and medications.

Here are some more tips:

• Read food labels carefully
• Check restaurants for gluten-free menus and let the server know you have gluten ataxia
• Store and prepare foods with gluten in different areas than gluten-free foods
• Avoid buying in bulk due to possible cross-contamination

Completely avoiding gluten might be impossible, as trace amounts are in many foods. However, try to avoid it as much as possible. You may find that you can tolerate a low amount. Always follow the guidance of a healthcare provider when trying diet shifts.

Complications

Gluten ataxia is a progressive condition, so it may cause certain neurological complications. It can cause irreversible brain changes that can be difficult to treat.

Other complications of gluten ataxia include:

• Encephalopathy: Conditions that cause a change in brain function (e.g., confusion, memory loss)
• Myopathy: Conditions that attack and weaken muscles
• Myelopathy: A spinal cord injury caused by compression
• Chorea: A movement condition that leads to involuntary movements

Living With Gluten Ataxia

Gluten ataxia is a chronic, progressive condition. You may reduce your symptoms by carefully avoiding all gluten products. Focus on naturally gluten-free products like legumes, nuts, and dairy products. Seek out gluten-free alternatives to baking products that use ingredients like rice, corn, cassava, tapioca, or millet.

Make sure all restaurants and servers—as well as family, friends, and coworkers—are aware of your intolerance. This will help reduce the risk of cross-contamination. Any utensil or surface that comes into contact with gluten should be sanitized afterward.