The Glutinous Gremlin

I knew something was wrong with my physiology, as I slowly hiked up the remote South Bass Trail in the Grand Canyon in late May 2008. This was my thirty - fifth hiking trip in the Canyon since 1979 and I was having significant difficulty keeping up with my wife, Cathy (a good hiker). As we hiked up one steep switchback after another to the canyon rim to the finish of our seven day backpacking trek, I found my legs lacking any energy and I simply had no endurance. In retrospect, the day before we left Austin to begin our trip there was a foreboding sign: I had to leave work early and go home to my bed because of severe abdominal pain.

Fast forward to Dec. 2008 and I’m rejected as a blood donor for the first time because my hematocrit is too low. A visit to my PCP confirms I have iron-deficient anemia, and a referral in Feb. 2009 to my gastroenterologist leads to a colonoscopy and EGD with duodenal biopsies to determine the etiology of my anemia. After the anesthesia wore off, Cathy tells me that the gastroenterologist found mucosal damage to my small intestine consistent with an autoimmune disease called Celiac Disease (CD).

Subsequently, the pathology report reveals my duodenum had scalloping and a severe mucosal lesion with villous blunting (consistent with malabsorption), crypt hyperplasia, increased intra-epithelial lymphocytes, epithelial injury, and increased lamina propria inflammation. Post-op serology tests are positive for CD-related anti-tissue transglutaminase and anti-endomysium antibodies, which correlated with the mucosal damage to my small intestine.

I’m now advised to maintain a strict gluten-free diet (GFD) for the rest of my life. And I also receive a surprise phone call from my gastroenterologist sincerely apologizing for his presumed diagnosis of irritable bowel syndrome (IBS), as the cause of my chronic abdominal discomfort for the past decade. Soon thereafter, I’m also diagnosed with osteopenia secondary to my CD and, per my gastroenterologist, if I hadn’t been so physically active it more than likely would have progressed to osteoporosis.

In July 2009, on a hunch, I see an endocrinologist because I still wasn’t feeling as well as I had expected despite having eaten “gluten-free” for several months. The endocrinologist checks my thyroid and diagnoses a second autoimmune disease: Hashimoto’s thyroiditis. A rheumatology consult follows because of the onset of chronic symmetrical joint pain and lab results reveal positive ANA titers and low C3 complement, so I’m now being followed for periodic evaluations of my CBC, chemistry profile, and urinalysis and an annual Lupus auto-antibody panel.

Because of the hereditary nature of CD particularly among first-degree relatives my sister and brother and their children are also screened for CD—and my sister’s youngest daughter, age 16 (asymptomatic) and my brother’s youngest daughter, age 15 (symptomatic) are also confirmed by small intestinal biopsy as “celiacs.”

How could a harmless piece of bread, the staff of life, be “toxic” or pathogenic to a celiac? Surprisingly, the environmental trigger of CD is the gluten in the bread, which turns on the autoimmune response because it’sperceived as a toxin in susceptible individuals. Gluten, which gives bread its chewy texture, is a composite of storage proteins found in wheat, barley, rye and related grains within the tribe of the grass family Triticeae. Even a trace amount of gluten can trigger a response in some celiac patients and have an injurious effect absent any symptoms.

According to the U.S. Department of Agriculture, gluten is a ubiquitous staple in the American diet as white bread, white flour, and white rolls are among the top nine foods eaten by Americans. In fact, many processed foods contain gluten and even “wheat-free” products are not necessarily gluten-free (GF) because they may contain other prohibited grains such as barley or rye. Gluten is also found in cold cuts, sandwich spreads, canned meats, salad dressings, soups, condiments, and in flavorings, seasonings, preservatives, emulsifiers, thickeners, and stabilizers. Hidden sources of gluten are common in non-food products too such as prescription and OTC drugs (as a filler or an inactive ingredient), cosmetics, toothpaste, and even in envelopes (that you lick to seal).

Permitted or non-toxic grains for celiacs include wild rice, corn, buckwheat, millet, amaranth, quinoa, teff, and oats although oats remain controversial because some celiacs react to oats and/or because of cross-contamination with non-permitted grains during the processing and harvesting of oats.

Celiac disease is now considered a common autoimmune disease and it goes by other names such as coeliac disease; celiac sprue; non-tropical sprue; gluten intolerance, and gluten-sensitive enteropathy. It’s found in people of nearly all ages throughout the world and it can develop at any time in an at-risk individual. There is no cure for CD and children tend to present with the more classic signs of CD, including failure to thrive, chronic diarrhea/constipation, recurring abdominal bloating and pain, fatigue and irritability. The most common symptom in adults is iron-deficient anemia that does not respond to iron supplementation. But more often than not, particularly in adults, the symptoms of CD may not present as a one might expect: they can vary from no gastrointestinal symptoms (silent CD) to severe malnutrition or they can resemble an extra-intestinal (atypical) disorder.

I was born in Germany, but grew up in N.J. where I developed a love for good Italian food, subs, and later an assortment of baked goods and energy bars. I never paid much attention to how much gluten I ate—it was a lot—or to my immune system and how fundamental it was to just about every facet of my health, until I was diagnosed with Celiac Disease (and later Hashimoto’s thyroiditis). And despite not receiving my CD diagnosis until the fifth decade of my life, I now feel fortunate to have finally learned what was causing my chronic abdominal distress.

i knew something was wrong