May is National Celiac Disease Awareness Month, but just what is this strange sounding disease, known as celiac sprue or gluten sensitive enteropathy (GSE)? Celiac disease is a genetically-based autoimmune disease that is triggered by the ingestion of gluten—a protein found in wheat, barely, and rye. It is estimated that 1 in 133 Americans has celiac disease yet an nearly 83 percent of these individuals are either undiagnosed or misdiagnosed. When an individual with celiac disease consumes gluten, he or she sets off an immune reaction that damages the villi (fingerlike projections) in the intestine, thus interfering with the absorption of nutrients. In children this can exhibit as a “failure to thrive” and in adults can cause malnutrition (even in individuals considered “overweight”).
Classic symptoms of celiac disease include abdominal pain, chronic diarrhea or constipation (or both), unexplained anemia, bone or joint paint, and fatigue among other symptoms. If left untreated, the decreased absorption of nutrients (malabsorption) that occurs with celiac disease can cause chronic and life threatening vitamin deficiencies that deprive the brain, peripheral nervous system, bones, liver, and other organs of vital nourishment resulting in iron deficiency anemia, early onset osteoporosis, and increased risk of intestinal/gastric cancers. Celiac disease is associated with various autoimmune disorders including rheumatoid arthritis and lupus as well as other syndromes such as fibromyalgia (May is also fibromyalgia awareness month) and chronic fatigue. There is no pharmacological cure for celiac. The only treatment is a strict, lifelong gluten-free diet.
In addition to celiac disease there is a condition known as non-celiac gluten sensitivity (also known as NCGS or gluten sensitivity) in which the bodily reaction to gluten causes symptoms similar to celiac disease without causing the damaging effects to the intestinal villi. The exact cause of NCGS is unknown and there is currently no approved test to diagnose it. The recommendation is that these individuals also follow a strict, lifelong gluten-free diet.
How is celiac disease diagnosed?
Recognizing celiac disease can be difficult because some of its symptoms are similar to those of other diseases. Celiac disease can be confused with irritable bowel syndrome, iron-deficiency anemia caused by menstrual blood loss, inflammatory bowel disease, diverticulitis, intestinal infections, and chronic fatigue syndrome. As a result, celiac disease has long been underdiagnosed or misdiagnosed. Currently there are two methods for testing for celiac disease and gluten intolerance: blood test for higher levels of certain autoantibodies and a biopsy of the small intestine by endoscopy. It is important to note that before being tested, one must continue to eat a diet that includes foods with gluten, such as breads and pastas. If a person stops eating foods with gluten before being tested, the results may be negative for celiac disease even if the disease is present.
What is does a gluten-free diet consist of?
There are many naturally gluten-free foods such as fresh fruits, vegetables (with no sauces added), nuts, beans and seeds, fresh fish, and meats (without gravies or sauces added). Additionally there are some grains that are naturally gluten-free such as quinoa, teff, millet, amaranth, and rice, as well as many cheeses (but not all diary/cheese products). With the rise in diagnoses of celiac disease and gluten intolerance, more stores are advertising and carrying “gluten free” products.
Careful label and menu reading is strongly recommended. Individuals with celiac disease must be very careful when consuming processed foods or eating out at restaurants. Even the smallest amount, 24 to 30 milligrams of gluten — about 1/145th of a slice of conventional bread (about the size of a crumb) — can be enough to cause intestinal inflammation and a “flare” of symptoms. And it isn’t just food that individuals living with celiac have to worry about: supplements and medications, cosmetics, toothpaste, and various other items may contain “hidden” non-active ingredients such as gluten.
Living with an allergy and/or sensitivity to gluten can be major life adjustment but there are many online resources available for further information, current research, support, and even recipe sharing to make the transition easier!
Celiac Disease Foundation (CDF)
CDF is a non-profit, public benefit corporation dedicated to providing services and support regarding celiac disease and dermatitis herpetiformis, through programs of awareness, education, advocacy, and research.
National Foundation for Celiac Awareness (NFCA)
Through empowerment, education and advocacy, the National Foundation for Celiac Awareness (NFCA) drives diagnoses of celiac disease and other gluten-related disorders and improves the quality of life for those on a lifelong gluten-free diet.
Celiac Disease Awareness Campaign from the National Institutes of Health
The Awareness Campaign provides current, comprehensive, science-based information about the symptoms, diagnosis, and treatment of celiac disease, also known as celiac sprue, nontropical sprue, and gluten-sensitive enteropathy.
Center for Celiac Research & Treatment
The Center for Celiac Research is engaged in clinical care, diagnostic support, education, and clinical and basic science research in celiac disease.
National Digestive Diseases Information Clearinghouse (NDDIC) Celiac Information Page
Living with celiac disease and gluten intolerance is certainly easier than it was many years ago and with continued awareness and education people living with this disease can live, eat, and enjoy food with greater acceptance, understanding, and ease.
Collection Spotlight from the National Rehabilitation Information Center 