We tend to think about Celiac Disease (CD) and Gluten Sensitivity (GS) as primarily problems with our guts and how our guts respond to gluten and other gliadins in wheat and other cereal grains. Recent research has shown what many of us have known for a long time—CD and GS are not just a problem for our digestive systems, all of our body systems can be affected until we get gluten free—and, some of the effects of long-term exposure to glutens may be longer lasting than others. It is important to know that the neurological problems may be the first things people will notice—so it is important that anyone with “unexplained” neurological symptoms be checked for gluten sensitivity (1).
One of the systems adversely affected by CD and GS is the neurological (nervous) system. There are many possible symptoms including developmental delays and learning disorders in children, depression, migraine, and headache.
One of the most common effects on the nervous system is cerebellar ataxia, which can be defined as a “sudden, uncoordinated muscle movement due to disease or injury to the cerebellum in the brain”(2) Symptoms can involve areas of the body from the neck to the hips, the arms or the legs. These movements can be a sudden side-to-side motion or a back and forth motion. The arm and leg movements can be swaying as well. Someone with cerebellar ataxia can also have slurred or awkward speech, problems with walking, and/or repetitive or uncontrolled eye movements.(2) This type of movement disorder is actually sometimes called “gluten ataxia”!(3) Early treatment by removing gluten from the diet most often leads to great improvement and will often completely stop the progression of the neurological damage.(3)
Another common problem is called peripheral neuropathy. Peripheral neuropathy (PN) affects the hands and feet and is usually described as feelings of numbness, pain or tingling along with a possible loss of sensations such as touch or sensitivity to vibration or temperature. It is often referred to as a “stocking and glove” neuropathy because some people will describe a burning and others may describe the loss of sensation, feeling like they are wearing socks or gloves.
There are many causes of peripheral neuropathy—it can be caused by injuries, infections with viruses or bacteria, exposure to various toxins (such as gluten) and by other conditions such as diabetes. The “bridge” between all of these is damage to the peripheral (outer) nerves of the hands and feet.
The most common type of PN in people with gluten sensitivity involves both sensations and movements. Feeling differences between hot and cold, feeling vibrations and knowing how well you are holding on to, say, a cup of coffee may be the first symptom. A sense of “clumsiness” or a feeling as if you don’t know where your feet are or where your arms are may be another. Movement may be affected as well with a sense of clumsiness walking or moving around.
In fact, there are some who feel that CD and GS are more neurological disorders than immunological ones! In a recent article in the journal Medical Hypotheses, the author suggests just that—that both CD and GS should be considered a neurological disorder because the neurological symptoms can show up in people without any intestinal (i.e, microvillous) damage.(4) The problem for me here is the assumption that you have to have evidence of extensive damage to the microvilli—and I think that this biopsy test that is usually considered diagnostic is actually the endpoint of the damage that has taken years to happen. Generally, diagnosis of CD is made with an antibody test (not always so very reliable) and confirmed with a biopsy of the intestine—if the microvilli are flat or shrunken, then the diagnosis of CD can be made—but for that amount of damage to occur, a long time must have passed, which is why I say it is an endpoint. For example, if you look at a section of intestinal tissue long before this endpoint, you will see plenty of inflammation and harm going on long before the type of damage that is considered diagnostic for CD is present.(1,3,5,6)
The damage to the nerves is mediated by the immune system in both CD and GS.(6,7,8) It appears that the same antibodies that are produced by the immune system by gluten bind, or attach to, certain cells in the nervous system and cause the damage.(9) At some point in the process of both CD and GS, your immune system may become overwhelmed and “confused” and begin to produce antibodies to self (autoantibodies) that aggravate the process even further.(10,11,12) This may also be part of the reason that people with CD and GS have a condition called dermatitis herpetiformis—these same autoantibodies react with cells in the skin and can cause the rash.(13)
Complicated, right? But, the straightforward “take-home” lesson is that CD and GS are not just disorders of the digestive system—but, staying gluten free can prevent, stop and even reverse these symptoms!