Many words have been written of late about gluten this and gluten that, or gluten free and gluten sensitive. In some cases, gluten-free lifestyle has become the new “froo-froo” way to be, which sometimes serves only to weaken the case for those truly suffering from gluten sensitivity and Celiac.
What I am going to write, is by no means a thesis on the topic. Only the ramblings of an observer to someone who suffers from this (legitimately) and has done some reading to better understand this existence.
Most of the research and writing it seems, on the “glutenitis” (as I like to call it), is about the gut disturbances and such. The upset bellies, pain, and of course the unpleasant trips to the loo. Much less seems to be out there about the neurologic aspect to it all.
Much to my own surprise, after 15 years in EMS, I had never seen personally or heard of a case of neurologic dysfunction secondary to gluten exposure. As such, one summer day, when faced with a friend suffering from slurred speech, left sided weakness and accompanied tremors, it “must” be a stroke, or at the very least, a TIA. Well, after a visit from local EMS, a drive in an ambulance, examination, CT and the battery of first line neurologic tests which showed nothing short of a miraculous recovery, the peanut gallery was stumped as to what had happened.
Early in my career, I realized sometimes even better than a thorough physical examination, a complete probing examination of history, both past medical and situational histories, shed a light on the cause of a patient’s presentation. In this case, in the 4-5 days prior to this stroke like presentation was a relatively decent exposure to gluten. in the form of, all things, pepperoni.
I take great interest in this episode, as I may have played a direct part in the exposure, well meaning as it was. Long denied a favorite treat, I thought I had located a source of pepperoni made without any wheat or other gluten sources. My friend, when presented with this seldom treat, indulged. Within short, they determined that in fact, the clerk at the deli was wrong and the pepperoni was indeed made with wheat binders. The inevitable occurred within short, followed by this frightening experience a few days later.
Enough of the story. How does this occur? Well, my friends…
For the purposes of this rant, I am, quite unprofessionally, directly copying, what I read in the article:
“All in Your Head: Ataxia and Untreated Gluten Sensitivity” by Alicia Woodward, GLUTEN FREE AND MORE
Gluten ataxia, a disorder of the immune system, belongs to the same spectrum of gluten sensitivity as celiac disease and dermatitis herpetiformis. In these conditions, a heightened sensitivity to gluten, the protein in wheat, barley and rye, creates an increased level of allergy-fighting antibodies (specifically, anti gliadin IgG and IgA) that turn on the body and attack it.
Symptoms of gluten sensitivity can be numerous and vary widely from individual to individual. Generally speaking, celiac disease is evidenced in the gut by damage to the small bowel. Dermatitis herpetiformis is evidenced on the skin by an itchy rash. With gluten ataxia, the focus of disease activity is in the brain, specifically the cerebellum, the center that controls coordination and complex movements like walking, speaking and swallowing. Often, the peripheral nerves located outside the spinal cord are also involved, leading to chronic and progressive neuropathy, a disease affecting the nervous system that results in feelings of numbness, tingling or pain.
Ataxia means clumsiness or loss of coordination. Symptoms of gluten sensitivity with neurologic manifestations are slurred speech, loss of coordination in upper and lower limbs, difficulty with normal walking, ocular problems, chronic headaches. It may affect the fingers and hands, the arms or legs, the body, speech or eye movements. In children and young adults, gluten ataxia can also cause developmental delay, diminished muscle tone, learning disorders and ADHD.
Recent studies indicate that gluten ataxia is a common cause of sporadic idiopathic (of unknown origin) ataxia, accounting for up to 40 percent of cases. Yet despite its prevalence, the disease isn’t well known and diagnosis is frequently missed. The reason? Doctors often look for gastrointestinal distress before they will consider the possibility of gluten sensitivity.
“Gluten ataxia is out there but so few of us have seen it—or perhaps recognized it,” Schwarz says. “If you see a patient who has malabsorption problems, they can’t tolerate this or can’t tolerate that, if they have gastrointestinal complaints along with neurologic symptoms, then you order the antibody tests. Yet most patients I see with neurologic manifestations of gluten intolerance don’t have a lot of GI symptoms, if any.”
According to a 2003 study published in Brain, gastrointestinal symptoms are present in only 13 percent of patients with gluten ataxia. “It’s been estimated that for every one patient with celiac disease who presents with GI complaints, there are seven patients with celiac disease who have no GI symptoms …. Only a proportion of patients presenting with neurological dysfunction association with gluten sensitivity will also have GI symptoms.”
The bottom line is that gluten sensitivity can be primarily—and at times exclusively—a neurologic disease.
“This is a disease that’s difficult to diagnose unless you maintain a low threshold of suspicion,” Schwarz says.
The blood panel to screen for gluten ataxia is the same used to ascertain gluten sensitivity. It measures the anti gliadin antibodies (IgG and IgA) circulating in the blood, along with the endomysium and tissue transglutaminase antibodies. “A small bowel biopsy is not needed if symptoms are neurologic and antibodies are positive,” Schwarz says.
“If antibody results come back positive, I’ll send the patient to a gastroenterologist to do a small bowel biopsy to check for classic changes attributable to celiac disease, but even if this is normal, I will still recommend a six-month trial on a gluten-free diet,” Schwarz says.
Research by Dr. Marios Hadjivassiliou and colleagues published in Brain in 2003 states, “…. IgG antigliadin antibodies by definition remain the best diagnostic marker for gluten ataxia.”
Again, I make no claim that this is my work, but thank you Ms. Woodward for explaining it so succinctly.
The most amazing part in the entire clip is the statistic is that the VAST majority of patients with this disease which has been, for me at least a, GI thing, HAVE NO GI complaints!! Who would have thought? Little did I know that is was so much more neurological in nature. I suspect that the general public is in the same boat as this humble observer.
I share this bit of trivia and study to shed light on what is an elusive diagnosis. If you read the entire article, you learn that the patient in that case went to 4 neurologists for a diagnosis that made sense. My friend went to their GP, a neurologist, GI specialist, and finally a rheumatologist before determined that they were not going crazy, but, in fact, suffering from a real thing.
Humbling that this know it all can still be taught something after all these years.
Keep reading, keep asking, keep learning.