Wrong! Remember, in the movie Titanic, the panoramic ocean scenes with icebergs dotting the horizon? And the scene where Leonardo DiCaprio, leaning overboard, notices an iceberg suspiciously close on the ship’s starboard side? What happened to the Titanic is what closely resembles our current health-care approach and attitudes toward gluten intolerance and celiac disease. What seems small and insignificant on the surface is actually gigantic and life-altering.
In the 1st century A.D., Aretaeus the Cappadocian gave the earliest description of coeliac (Latin spelling) disease: Patients have eructations, flatulence and heavy pains of the stomach. They are emaciated and atrophied, pale, feeble, and the stomach labors in digestion (On the Coeliac Diathesis). Later, it was found that the villi (the “shag carpet” that absorbs food) lining the intestines atrophy and alter the lining (“shag becomes “Berber carpet”), causing an increase in lymphocytes, which indicates inflammation and an immune response in the gut. The introduction of the small-bowel biopsy in the 1950s further directed researchers toward the gut as a target organ.
Fact: Only one out of every three sufferers of celiac disease/gluten intolerance has a gut issue. In a 2002 landmark editorial titled ‘Gluten Sensitivity as a Neurological Illness in the Journal of Neurosurgical Psychiatry, the authors concluded it’s an historical misconception that gluten sensitivity is principally a small-bowel disease. And according to a clinical review in the July 1999 issue of British Medical Journal (Vol. 319, 236-239), for every patient with overt gut symptoms, there are eight others who have no obvious ones!
Recall that iceberg. What you see above the water represents patients with clinically overt/classic celiac disease (gut symptoms). Under the water, however, is the largest portion of the iceberg, representing people with undiagnosed, silent “celiac disease” which may be causing symptoms in the brain, skin, liver, heart, and endocrine and muscular systems. This doesn’t even include people with latent celiac disease, those who have the potential to develop it. So, if you’ve been told you suffer from colitis or irritable or inflammatory bowel syndrome after being tested for celiac disease, you should be okay, right? Unfortunately, you may be among a large population of people “cleared” by ill-informed medical-care providers who haven’t stayed current on the latest research, testing, symptoms, and proper management.
Standard testing methods for celiac disease can create false negatives for multiple reasons. First, not all blood markers are created equal. There are currently four mainstream markers for diagnoses, but a few are dependent on a healthy gut barrier, the same barrier that’s destroyed with gluten consumption! Second, most providers still think of celiac as a gut disease, so likely won’t test for gluten sensitivity in patients who don’t report classical digestive symptoms. Third, gluten intolerance is an autoimmune disease so antibody levels may fluctuate. Genetic testing can help bridge this diagnostic gap, but any antibody left out may cause another false negative.
So what can you do if you suffer from irritable bowel syndrome, autoimmune disease, fibromyalgia, “brain fog” depression, anemia, hypothyroid, insomnia, osteoporosis, ADD/ADHD, fatigue, muscle weakness and literally hundreds more conditions? Find the right provider, who will look for the why the “cause of your symptoms” and will offer comprehensive diagnostic testing, including genetic markers, salivary testing, and a complete blood work-up.
Since the above-mentioned conditions typically correlate with gluten sensitivity, the right provider will understand the importance of a gluten-free diet, the significance of your symptom, and how it might relate to autoimmune diseases. (Note that, according to the October 2007 issue of the New England Journal of Medicine, one third of all gluten-intolerant people who start a gluten-free diet don’t achieve results by just changing their diet; because celiac disease can go undiagnosed for years, nutritional deficiencies can result.)
Lastly, the right provider will understand what you’re feeling and offer emotional, physical, and dietary support so that you feel empowered and able to regain your health.