You’ve heard of Crohn’s disease, cystic fibrosis, multiple sclerosis, and Parkinson’s disease. Celiac disease affects more people than all of these disorders combined – about 1% of the population. It is one of the most common genetic conditions in the world. The vast majority of Americans with celiac disease are undiagnosed.
When people with celiac disease eat a protein called gluten – found in wheat, rye and barley – their immune system responds by damaging the lining of the small intestine, where nutrients are absorbed. The resulting malnutrition can affect any system in the body, and can lead to one or more of 300 symptoms and conditions, many seemingly unrelated: gastrointestinal distress, anemia, infertility, intestinal cancers, osteoporosis, short stature, growth failure in children, bone and joint pain, depression, an itchy skin rash and dental defects. Here are lists of symptoms and associated conditions: University of Chicago Celiac Disease Center, Mayo Clinic or the National Institutes of Health Celiac Disease Awareness Campaign.
Atypical and Silent Celiac
Only a minority of people with celiac disease have the gastrointestinal symptoms classically associated with the condition. Many others have non-gastrointestinal (“atypical”) symptoms. Studies indicate that many people with celiac disease are not aware of any symptoms at all – they have “silent celiac.” In some cases, people recognize symptoms only in retrospect after they have been diagnosed and treated, and realize that they had often felt unwell, but that they thought it was normal to have a “bad stomach” or other aches and pains.
If left untreated, even atypical or silent celiac disease can lead to serious medical complications. As celiac disease is genetic (inherited), celiac experts recommend that the first-degree relatives (parents, siblings, children) of a person diagnosed with celiac be tested, whether or not symptoms are present. It is also recommended that symptomatic second-degree relatives be tested (grandparents, grandchildren, aunts and uncles, cousins, nieces and nephews). Silent celiac disease is often found when family members of a person diagnosed with celiac are tested.
Who Gets Celiac Disease
Until about 15 years ago, celiac disease was mistakenly believed to be a rare childhood disease, that children with celiac disease always appear thin and malnourished, and that it is found primarily in people of European ancestry. However, researchers have found that celiac disease is very common and can be found in people on any continent, of any nationality, race, weight and age, from infants to senior citizens. Forty percent are obese at the time of diagnosis. Celiac disease may be triggered in infancy when gluten is first consumed, or later in life, sometimes following a physical or emotional trauma. Family members of a person with celiac disease, and people with Type 1 diabetes, thyroid disease, and other autoimmune diseases have a higher rate of celiac disease.
The first step in diagnosing celiac disease is a blood test. There is no one perfect blood test to screen for celiac disease so the blood test is often a panel of several different tests. If the result is positive, a biopsy of the small intestine is usually performed to confirm the diagnosis. For detailed testing information, consult the websites of the University of Chicago Celiac Disease Center and its free eBook, National Institutes of Health, and CeliacNow.org, which is part of the Beth Israel Deaconess Medical Center (the teaching hospital of Harvard Medical School). Additional information for medical professionals is available from NIH Provider Points and the American College of Gastroenterology. Testing for celiac disease must be conducted prior to attempting a gluten-free diet. Persons wishing to be tested are advised to educate themselves and talk to their doctors about the latest information on symptoms and diagnostic methods, which may be found on the web sites of celiac disease centers around the country.
The only known treatment for celiac disease is a strict gluten-free diet for life, which heals the small intestine, and often, but not always, relieves the symptoms. Consultation with a registered dietitian and referral to a patient support group help the newly diagnosed regain their health and adjust. It’s helpful that the popularity and availability of gluten-free products is soaring, but people must take care to read ingredient labels and avoid cross contact with gluten when they dine out. Celiac disease treatment is the subject of extensive research and drug development, including some in clinical trials.
Non-Celiac Gluten Sensitivity
Celiac disease is a form of gluten intolerance. Non-celiac gluten sensitivity (also commonly referred to as gluten intolerance or a gluten allergy) is thought by some experts to be even more common than celiac disease. Little is known about non-celiac gluten sensitivity (NCGS) at this point, but it is the subject of a good deal of research and an evolving field of study. There is some evidence that FODMAPS, rather than gluten, may be the cause of symptoms associated with NCGS in some people. Although some of the symptoms may be similar to and as severe as celiac symptoms, non-celiac gluten sensitivity does not cause the damage to the small intestines (with the resultant malabsorption and health risks) that characterizes celiac disease.
Testing for Gluten Sensitivity
Currently, there is no scientifically valid test to diagnose non-celiac gluten sensitivity, and research is under way to develop one. Celiac experts warn consumers against buying tests from online labs that claim to offer tests for “gluten sensitivity,” “gluten allergy,” “gluten intolerance,” “gluten reactivity” or “gluten cross reactivity,” etc.; these labs may have scientific-looking websites, but the tests are not scientifically validated by research published in peer-reviewed medical journals, the system the medical profession has developed over centuries to protect patients. Save your money, your health and your family’s health by approaching diagnosis responsibly.
For information about non-celiac gluten sensitivity and how to diagnose it by first ruling out celiac disease and then eliminating gluten from the diet to see if symptoms are resolved, we recommend the MassGeneral Center for Celiac Research and Treatment and the University of Chicago Celiac Disease Center eBook.
The information on this page was adapted from materials published by nonprofit, government and university websites, including:
Beth Israel Deaconess Celiac Center and CeliacNow.org
Columbia University Celiac Disease Center
MassGeneral Center for Celiac Research and Treatment
National Institutes of Health Celiac Disease Awareness Campaign