There is reasonable evidence of neurological problems in Celiac disease (CD) even those well treated on a gluten-free diet should undergo periodic neurological screening. Peripheral neuropathy is found in almost half of people with CD. Previously, neurological complications in Celiac disease were reported to be as high as 36% or more than a third. Some unexplained neurological problems are present but not recognized by the patient or their doctor in many patients and some have several problems. Unfortunately, since brain imaging is not routinely done or recommended in those who are newly diagnosed we don’t really know how high these numbers may be really be. More staggering is the fact that we are still learning about people who fail to meet diagnostic criteria for Celiac disease but are being found to have gluten related neurological problems that respond to a gluten-free diet.
There are many neurological problems that in undiagnosed and untreated Celiac disease but include neuropathy, balance problems (ataxia), seizures, MS-like symptoms, headaches, memory impairment, depression and anxiety, inattention (ADD/ADHD), schizophrenia, dementia, muscle weakness, childhood developmental delay, autism (Asperger’s). The sad truth is that many patients have delays in diagnosis that result in delayed treatment and poor response even while adopting a strict gluten free diet. The average delay of diagnosis in adults is between eleven and thirteen years. Dr. Hadjivassiliou, a neurologist in England who is considered the world’s expert in gluten related neurological problems has communicated to me by e-mail and written that responses to a gluten-free diet may take five years and if the neurological condition has been longstanding complete recovery is not likely.
The symptoms of neuropathy are paresthesia (numbness) or dysthesia (burning, tingling, heaviness, “pins and needles” sensation”). Many of my patients also describe hypersensitivity of their skin such that they do not like air blowing on them or their children or spouses against their skin. Some admit to “bug crawling” sensation on their skin, something called vermiculation in medical terms but rarely asked about or given much thought by most doctors. Odd muscle movements under the skin that some call a “bag of worms” medically known as fasiculations are also very common but dismissed by many doctors. My wife, a physician with Celiac disease, actually had these occur while undergoing an EMG (electromyleograph, recording of muscle activity by placing needle electrode into the muscle) exam by an older neurologist. Despite observing these occurring visually and the monitor showing “static like noise” the neurologist dismissed them as “normal”.
Many patients with Celiac disease also have what the radiologists and neurologists call “UBO’s” on MRI exams of the brain. These unidentified bright objects (think UFO) are white spots that show up on images of the brain. When found in certain locations of the brain they are highly suggestive of multiple sclerosis (multiple scarring spots in the brain). However, though many people with CD have MS like symptoms and these symptoms often respond to a gluten free diet when started early enough, the UBO’s seen on MRI of the brain are typically not in the classic areas of MS. Instead it is common to find them in areas of the brain associated with migraines or balance difficulty (ataxia).
Some are seen in children associated with strange seizure problems even without obvious intestinal symptoms. A classic specific syndrome is very well recognized associated with epilepsy in both children and adults who have calcifications in their brain that can be detected by CT scan or MRI. Epilepsy is well documented but the studies are confusing enough that there is not a good consensus regarding the risk and recommended screening of all children with epilepsy.
Personally and professionally I have observed all of the neurological complications of Celiac disease and most of them I have also noted in patients in whom I have not been able to confirm CD but who have what I believe are objective signs and/or genetic risk for gluten sensitivity. I have patients with MS-like symptoms, chronic unexplained neuropathy, headaches, attention difficulties, autistic behaviors and developmental delays who have responded to gluten-free diet but if they had listened to doctors who maintained such a “restrictive, expensive, hard to follow” diet should only be “imposed” on those with a established diagnosis of Celiac disease.
If you have neurological problems get testing for Celiac disease before starting a gluten-free diet. If you test negative for CD, make sure they test you for the complete HLA DQ genetics that includes the high-risk white blood cell patterns DQ2 and DQ8 for Celiac disease AND get blood tests that include IgG and IgA gliadin antibodies. If your blood tests, including gliadin IgA and IgG antibodies, are negative or normal then consider stool testing for gliadin antibodies in the stool ($99, http://www.enterolab.com).
The evidence continues to accumulate, though often ignored or missed, that gluten is toxic to some people’s brains, even if they do not have CD. If you do have Celiac disease it is likely you already have neurological problems and may be at risk despite being on a gluten-free diet. Borrowing from the old advertisement against drug abuse “this is your brain on drugs” maybe we should be getting the word out “this is your brain on gluten”. Despite your test results, consider a trial of gluten-free diet after you have your testing done if you have unexplained or unresponsive neurological problems. You owe to your brain. Like my seven-year-old son said to one of our friends, “maybe you should lay off the gluten”.