During the German occupation of the Netherlands in WWII, massive starvation took place in 1944 and 1945, resulting in an estimated 22,000 deaths. One group of patients with intestinal problems paradoxically improved because of the shortage of bread. The Dutch physician, Dr. Willem Dicke, theorized that the culprit was the gluten in the wheat. Since there was a bread shortage, these patients got better. As a result of of this dreadful famine, celiac disease became understood.
What is Celiac Disease?
Celiac disease is primarily a digestive disorder caused by an immune reaction to gluten which in turn results in damage to the lining of the small intestine. This leads to malabsorption or difficulty absorbing nutrients. Gluten can be found in wheat, barley and rye, and also can be found in some medicines, beer, vitamins, lipstick, and some ice creams. Risk Factors: Celiac disease tends to run in families, but it can occur in anyone of any age or race. The chance of someone having it in the U.S. is somewhere between 1/100 -1/141; the prevalence is an estimate because most people who have it are undiagnosed. It is more common in females, and more common in those who suffer from other autoimmune diseases such as lupus, rheumatoid arthritis, thyroid disease, or type I diabetes. Symptoms in children and adults: Although celiac disease mainly affects the digestive system, it also affects other parts of the body resulting in different symptoms in children vs. adults. Children may have persistent diarrhea and abdominal bloating, delayed puberty, small stature, and have enamel defects in their teeth. Adults tend to have fewer abdominal symptoms and more systemic symptoms such as iron deficiency anemia, arthritis, osteoporosis, fatigue, peripheral neuropathy (numbness and tingling in hands or feet), and canker sores in the mouth. Although at one time celiac disease was thought to be primarily a childhood disease, in one study, one third of new cases were diagnosed after the age of 65. Since the 1950’s the rate of celiac disease has been increasing in all ages including the elderly. The diagnosis is more challenging in older people since the only GI symptoms may be abdominal bloating or flatulence. It is crucial to make the diagnosis in older adults since celiac disease greatly increases the risk of intestinal malignancies such as lymphoma or adenocarcinoma. Fortunately, a gluten-free diet has been shown to have protective effect.
Diagnosis Of Celiac Disease
Diagnosis starts with a thorough history and physical exam. The blood tests for EMA and tTGA antibodies are reliable for celiac disease if done while gluten is still in the digestive system. If a patient has an abnormal blood test result, it is important for the diagnosis be confirmed with an upper endoscopy and intestinal biopsy. I recall having evaluated one patient who had an abnormal blood test but who had a normal intestinal biopsy- indicating that he did not have celiac disease. Other conditions that may mimic celiac disease include non-celiac gluten sensitivity (NCGS), and wheat allergy. NCGS is poorly understood. It has similar symptoms to celiac disease, but is not an autoimmune disorder, nor does it cause damage to the small intestine. It is a diagnosis of exclusion after celiac disease and wheat allergy have been ruled out. Even when there is no medical diagnosis of celiac disease, many people choose to avoid gluten because they say it makes them feel better. Allergy to wheat differs from celiac disease in that the reaction to ingesting it usually begins within minutes, manifested mainly by hives or facial swelling. (As a side point, there are nine foods which are responsible for 90% of food allergies. These are peanut, tree nuts, milk, soy, egg, fish, shellfish, wheat, and sesame. Most children who have food allergies outgrow them by adolescence, but only 20% of those allergic to peanuts do so.)
Those who have celiac disease and NCGS benefit from adhering to a gluten free diet; those with wheat allergy benefit from refraining from wheat. For patients with celiac disease, permanently excluding gluten from the diet allows the intestine to heal, and improves absorption of nutrients. Symptoms of celiac disease usually improve within a few days with dietary adjustment. Unlike people who have lactose tolerance who can take effective enzyme supplements, gluten enzyme supplements don’t work. Products such as GlutenEase, Digest Gluten Plus, and Gluten Cutter are ineffective so don’t waste your money.
It is not easy to maintain a totally gluten free diet. Some products that contain gluten that one may not have considered include cosmetics, toothpaste and mouthwash, glue on envelopes, and children’s Play-Doh. For reliable guidelines, go to the Mayo Clinic website.
Since the Dutch famine of 1944-1945, doctors have learned a lot about celiac disease. If you have undiagnosed digestive symptoms or other chronic symptoms in which you are thinking about avoiding gluten, ask your doctor to do blood tests first. Avoiding gluten before taking blood tests for celiac disease makes the results inaccurate. For more information about celiac disease, visit the NIH website.
Jerry Saliman, MD is a volunteer internist at Samaritan House Medical Clinic in San Mateo. He retired from Kaiser South San Francisco after working there more than 30 years. While at Kaiser SSF, Dr. Saliman was also Chief of Patient Education. He received the 2012 “Lifetime Achievement Award” given by the Kaiser SSF Medical Staff.
Editing acknowledgement: Ellen Saliman
Neither the PJCC or our guest columnists provide medical advice, diagnosis, or treatment. Please make your health care decisions in partnership with your health care provider.