Celiac disease is one of the most commonly undiagnosed/misdiagnosed conditions in recent history.
There are 3 million+ cases in the US, but that’s not the most surprising fact… Approximately 97% of these cases are undiagnosed - in part due to a lack of awareness, in part due to a lack of research.
There are a plethora of symptoms associated with the condition, giving a reason for the average diagnosis time of a whopping 4 years, including diarrhea, abdominal pain, bloating/flatulence indigestion and constipation. But one of the worst symptoms/conditions that can occur as a result of celiac disease is gluten ataxia.
Gluten ataxia is a rare neurological autoimmune condition that involves the body’s reaction to gluten. The condition can irreversibly damage the part of the brain responsible for the coordination of the body - a huge problem when it comes to day-to-day tasks.
But what causes gluten ataxia, how can it be treated and is there any cures on the horizon?
What causes gluten ataxia
The neurological autoimmune condition is perhaps the worst of all potential symptoms and long-term issues that surround the celiac disease.
With irreversible damage to the cerebellum, it’s important that the condition is picked up and picked up fast - so there’s no time for the average 4-year diagnosis here. Damage can potentially cause issues relating to the gait (a person’s manner of walking), gross motor skills and coordination that can lead to progressive disabilities in the worst cases.
In gluten ataxia, the antibodies released to target and digest the gluten consumed also work against the body to attack the cerebellum. The symptoms (as covered later) start off mild and progressively become worse if left untreated and can lead to permanent damage to the brain.
There is also some evidence to show a link between gluten ataxia and cerebellar atrophy (shrinkage of this portion of the brain).
Symptoms of gluten ataxia
When it comes to gluten ataxia, symptoms may vary from person to person.
As the condition is progressive, it’s expected that symptoms may start off mild and mostly undetected, but can gradually progress to become debilitating. As a general rule, the condition could include any of the following:
Difficulty when using fingers, hands, arms and/or legs
Difficulty when speaking
Difficulty when moving the eyes
Poor coordination and/or balance
Tingling in extremities
Problems with gait
Damage to the cerebellum (the portion of the brain responsible for coordination)
As the condition of gluten ataxia is still relatively new, physicians and experts surrounding the topic are not in complete agreement that the condition actually exists.
There’s currently no accepted way to test for it or diagnose it, so until there’s conclusive evidence, the argument is likely to stick. Unfortunately, this makes gluten ataxia very difficult to diagnose and for treatment to be prescribed.
Treatment of gluten ataxia
If caught in the relatively early stages, gluten ataxia can easily be treated and the symptoms reversed with the elimination of gluten from the diet.
It is essential that the ingredients of all foods are checked and labels scanned to ensure no gluten is present. Even the smallest trace of gluten found in the diet can cause gluten ataxia’s progression to continue and worsen. Once the diet is entirely gluten-free, it can take time for the symptoms to improve.
By avoiding bread, pasta, cereals, biscuits or crackers, cakes, pastries and pies and instead opting for meat, fish, fruits and vegetables, rice, potatoes and lentils you can be safe in the knowledge that your diet is up to scratch. Gluten-free options of some traditionally gluten-heavy products do exist, but make sure to double-check before wolfing down on a loaf of questionable bread.
Not all doctors and healthcare professionals are in unanimous agreement that the removal of gluten from the diet will improve ataxia, heavily due to the various other ataxia conditions present. However, there is plenty of anecdotal evidence that suggests the removal of gluten will improve the symptoms found in ataxia symptoms.
Ultimately, there’s no harm in completing the celiac disease test and gaining information surrounding a potential gluten intolerance.
Who’s affected by gluten ataxia
As the condition is not fully established, it’s very difficult to gauge the number of cases found both in the US and the world as a whole.
However, some researchers suggest that up to 41 percent of all people suffering from celiac disease (approximately 3 million in the US) may be suffering, perhaps unknowingly, from gluten ataxia.
It is also thought that although symptoms of the condition can develop at any age, the majority of cases are found during early childhood, between 8 and 12 months old and in later adulthood between the ages of 40 and 60.
Diagnosing gluten ataxia
As there is no recognized method of diagnosis for the condition, it’s unlikely that doctors will even test for gluten ataxia, especially with other, more recognized forms of ataxia.
As of current, researchers are recommending the use of techniques that are currently used to diagnose celiac disease, eliminating one potential cause of the symptoms seen. A positive result, although may not be the cause of ataxia, does indicate that the individual should start and stick to a gluten-free diet.
Help and support
With such drastic changes required to the lifestyle and the potential loss of some motor skills, it can be a very stressful and difficult task to adjust.
If you need any help, support or assistance - visit the National Celiac Association for a fantastic source of advice, information and events throughout the US.
There’s also toll-free helpline available: 1-888-4-CELIAC.