How many people have gluten ataxia?

Question: How many people have gluten ataxia?

Answer:

It's very difficult to determine how many people might have gluten ataxia. The condition isn't necessarily acknowledged by all mainstream physicians, and there's no accepted medical test to diagnose it.

However, it is possible to speculate on how many people might be affected by gluten ataxia. In addition, there's more research available on how many people have neurological symptoms (but not necessarily ataxia) from celiac disease or gluten sensitivity.

Gluten Ataxia Affects Mainly Balance, Gait

When you have ataxia, your brain has trouble coordinating your muscle movements, which leads to problems with your balance and gait. You also may have difficulty with eye movements, and you may not be able to swallow normally. (Read more: Gluten Ataxia Symptoms)

The condition can develop over time or appear suddenly. Head trauma, stroke or multiple sclerosis can cause ataxia, or it may be "idiopathic" (without a known cause).

According to Dr. Marios Hadjivassiliou, a consultant neurologist at Royal Hallamshire Hospital in Sheffield, U.K., and the physician who first described gluten ataxia, gluten likely is one of the most common causes of idiopathic ataxia.

Idiopathic ataxia occurs in approximately 8.4 people out of every 100,000 in the United States - approximately 0.0084% of the population - making it a rare condition. Only about 26,000 people are thought to be affected.

(For comparison, celiac disease occurs in approximately 0.75% to 1% of the population, and there are an estimated 3 million celiacs, most of whom are undiagnosed.)

Research performed by Dr. Hadjivassiliou and others estimates that between about 11% and 41% of people with idiopathic ataxia actually have gluten ataxia, which means only about 2,990 to 10,660 people would suffer from the condition in the United States.

Still, because there's no universally accepted definition of gluten ataxia and no medical test for it, these are only very rough estimates — it's impossible to say how many really may be affected.

Neurological Problems Affect Those with Celiac Disease, Gluten Sensitivity

It's much easier to say how many people with celiac disease suffer from neurological problems, which can include (but are certainly not limited to) ataxia.

Researchers estimate that celiac disease is associated with otherwise unexplained neurological dysfunction in 6% to 10% of cases. The neurological dysfunction can take the form of ataxia, neuropathy from gluten (which involves tingling in your extremities), myopathy (muscle weakness and spasms), myelopathy (problem with your spinal cord) and dementia.

Ataxia and peripheral neuropathy are the two most common unexplained neurological problems in people with celiac disease. Dementia is uncommon and usually occurs along with another neurological condition, such as ataxia.

Since research into non-celiac gluten sensitivity is in its infancy and (like gluten ataxia) not all physicians accept that it exists, it's less clear how many people with gluten sensitivity might have gluten ataxia.

However, Dr. Alessio Fasano , director, University of Maryland Center for Celiac Research, estimates that 30% of people with gluten sensitivity have some form of neurological problem among their various gluten sensitivity symptoms.

Most of these take the form of peripheral neuropathy, gluten-triggered migraines, attention-deficit hyperactivity disorder associated with gluten consumption, gluten-induced depression or gluten-related anxiety, according to Dr. Fasano. No research has been done on whether people with non-celiac gluten sensitivity suffer from gluten ataxia.

Because research in the overall area of gluten ataxia is so new, and the condition hasn't been universally accepted, it will be some time before it's clear how many people have it.

Sources

Bushara K. Neurologic presentation of celiac disease. Gastroenterology. 2005 Apr;128(4 Suppl 1):S92-7.

Fasano A. et al. Spectrum of gluten-related disorders: consensus on new nomenclature and classification. BMC Medicine. BMC Medicine 2012, 10:13 doi:10.1186/1741-7015-10-13. Published: 7 February 2012

Hadjivassiliou M. et al. Dietary Treatment of Gluten Ataxia. Journal of Neurology, Neurosurgery and Psychiatry. 2003;74:1221-1224.

Hadjivassiliou M. et al. Gluten sensitivity as a neurological illness. Journal of Neurology, Neurosurgery and Psychiatry. 2002;72:560-563 doi:10.1136/jnnp.72.5.560.

Hadjivassiliou M. et al. Gluten ataxia in perspective: epidemiology, genetic susceptibility and clinical characteristics. Brain. 2003 Mar;126(Pt 3):685-91.

Hadjivassiliou M. et al. Gluten Ataxia. The Cerebellum. 2008;7(3):494-8.

Rashtak S. et al. Serology of celiac disease in gluten-sensitive ataxia or neuropathy: role of deamidated gliadin antibody. Journal of Neuroimmunology. 2011 Jan;230(1-2):130-4. Epub 2010 Nov 6.

Zelnik N. et al. Range of neurologic disorders in patients with celiac disease. Pediatrics. 2004 Jun;113(6):1672-6.

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