For years, medical students were taught that celiac disease was extremely rare. In this condition, the protein in wheat, barley and rye (gluten) triggers an autoimmune response that destroys the intestinal lining.
People with celiac disease develop a range of symptoms when they eat foods made with flour such as bread, pancakes, pretzels, pizza or pasta. Drinking beer can also trigger problems.
Some individuals experience digestive upset. Gas, bloating, heartburn, cramping and diarrhea are not uncommon. Fatigue and anemia are also complications of this disorder. Migraine headaches, osteoporosis, neuropathy, cognitive impairment and even cancer can be long-term consequences of celiac disease.
Now physicians are recognizing that celiac disease should not be considered rare. Blood tests reveal that as many as one American in 130 or so may have it, although many are undiagnosed (American Journal of Gastroenterology, online March 1, 2011).
Some patients have become frustrated in trying to find the source of their symptoms, however. Despite difficulties that would suggest celiac disease, blood tests may come up negative. Here is how one reader describes her experience:
“I am 33 years old and for years I have suffered from irritable bowel syndrome (IBS) with diarrhea, chronic fatigue, hair loss, Raynaud’s phenomenon, fibromyalgia, peripheral neuropathy, iron deficiency anemia, polycystic ovaries and arthritis pain in my back. I was diagnosed with all of those things separately.
“Doctors were puzzled about these ailments because I was so young. They looked for lupus, rheumatoid arthritis, multiple sclerosis and other diseases but all the tests were negative.
“Recently, I learned about celiac disease and gluten-free (GF) diet. I had the blood test for celiac and it was negative, but I went ahead and started following the GF diet.
“In the two weeks since I began GF, my IBS symptoms have disappeared! My fatigue is lessened. My hair loss is decreasing. I am taking fewer anti-inflammatory medications.
“I have told my sister about it since celiac disease is hereditary. She is 37 and was diagnosed with thyroid disease and early-onset osteoporosis as well as severe migraines. All of those could be symptoms of celiac. Our mother has terminal adenocarcinoma and most of her life she struggled with fibromyalgia and IBS.
“I return to my doctor in a few weeks and plan to tell her that the GF diet is working for me despite the blood tests being negative, because I understand that the instance of false negatives is high. I am so surprised that doctors have missed this possibility with my family for so many years. All the damage that could have been prevented if we had only known!”
Even people who test negative for celiac disease may react badly to gluten, as two recent studies confirm (BMC Medicine, March 9, 2011; International Archives of Allergy and Immunology, online Feb. 22, 2011). These individuals also benefit from a gluten-free diet.
Foods containing gluten are very widespread in the American diet. Choosing a gluten-free approach requires vigilance, but for those with serious sensitivities, it is worth the effort.