At the current time, most adults with undiagnosed celiac disease seek medical care because of atypical symptoms, and often do not have the usual intestinal complaints previously thought to occur in all celiac patients. Sometimes, the first problem that presents itself is in the nervous system.
A wide variety of neurologic abnormalities have been seen in patients with celiac disease. Often these would not prompt treating doctors to think of celiac disease.
While the medical community is learning about the relationship between celiac disease and disorders of the central nervous system, it is not at all clear what about CD causes damage to the nervous system and how it might be specifically treated.
Estimates of the percentage of people with CD that have neurologic complications vary. Some research indicates that as many as 6% to 10% of all patients with CD have some kind of neurologic complication. Other researchers have noted that as many as 36% of adults with CD may have neurologic problems.
As many as 50% of patients with CD may develop what is called a peripheral neuropathy. For some, these problems may occur after the disease is diagnosed. For others, a neurologic complication may come first.
When thinking about problems in the nervous system, it is useful to understand a bit about the parts of the body involved. The brain is considered the central nervous system. It has various parts with different functions. The cerebrum, the main part of the brain controls much of people’s thinking, and actions such as walking and speech. The cerebellum, in the back of the brain plays a big role in balance control.
The spinal cord carries messages from the brain to the rest of the body via nerves that come off of the spinal cord. This is called the peripheral nervous system. The nerves send the message to muscles telling them to move, and bring back sensory information like pain. The messages from these nerves are needed for a person to know where his or her feet are as they walk.
Damage to both the central nervous system and peripheral nervous system can occur in people with celiac disease, although the mechanisms are not well understood.
The most commonly reported problems are dementia (problems with thinking, also called cognition), neuropathy (damaged or inflamed nerves), ataxia (difficulty with balance and walking), and seizures.
Symptoms may occur because of vitamin or other nutrient deficiencies. For example, low levels of vitamin B12 as well as folic acid and other vitamins are known to cause abnormalities in both the peripheral and central nervous system. This can include dementia as well as a peripheral neuropathy.
Vitamin deficiencies can occur as the result of damage to the small intestine. They can be aggravated by other illnesses that occur in patients with celiac disease. Some of the autoimmune diseases associated with CD can contribute to vitamin deficiencies.
When other illnesses are treated, a gluten-free diet is started, and vitamin deficiencies are corrected, the neurologic symptoms may improve. However, that is not always the case. Some nervous system problems never improve.
A peripheral neuropathy, especially one that is symmetrical – the same on both sides – and involves the lower legs and feet should make a treating doctor consider celiac disease. Again, this may be related to a vitamin deficiency, and treatment with a gluten-free diet may or may not improve the neuropathy.
Ataxia – trouble with balance when walking – can occur, with or without other nervous system abnormalities. This is often caused by some kind of damage to the cerebellum. It may or may not improve with a gluten-free diet. Vitamin E has been used with some success to treat ataxia associated with CD.
Other patients, especially children, may have seizures and be treated for epilepsy. A gluten-free diet may lessen the seizures and patients may be able to get off of their anti-epileptic medications.
Cognitive impairment or dementia – trouble with memory, thinking and processing information – can occur with celiac disease. As with most of the other problems, the impairment may or may not improve with a gluten-free diet.
Sometimes a person with CD may have multiple neurologic as well as what appears to be psychiatric symptoms. This can include anxiety and depression as well as psychosis, which means a break with reality. Cases have been reported in which these symptoms disappear when the patient sticks to a gluten-free diet.
Currently, the cause of all these problems is not known. Neurologic symptoms may be another type of autoimmune damage; they may have to do with some of the toxic substances the body makes in response to gluten. Research may give some answers as to why patients with celiac disease often have neurologic disorders.
It is worth looking for celiac disease in patients with some of these disorders, and consequently recommending a gluten-free diet to anyone that does have celiac disease.
Supplemental vitamins are also worthwhile. In the future, there may be specific treatments available. It is believed that early use of the gluten-free diet may in some cases help prevent further damage to the nervous system.
If you have celiac disease and any of these neurologic problems, make sure to discuss them with your doctor. Your doctor should make sure that you do not have any other autoimmune disorders, or if you do, that they are treated.
A trial of different vitamins, including vitamin E might be a good idea, as well as making an even greater effort to stick to the gluten-free diet.