Celiac disease (CD) is an autoimmune disorder that is triggered by the consumption of gluten-containing grains such as wheat, barley, rye and spelt. It has been long thought of as a rare illness that begins in childhood and manifests as diarrhea and weight loss due to malabsorption of nutrients from intestinal damage.
It turns out this conception of celiac disease is not accurate. CD is far more common than we used to believe, and the classical set of CD symptoms such as diarrhea and weight loss no longer reflects the profile of most newly-diagnosed patients, according to a new study from Italy.
Dr. Umberto Volta and his colleagues reported their review of the cases of 770 patients diagnosed with CD at St. Orsola-Malpighi Hospital in a recent study in the journal BMC Gastroenterology. What they found is that the clinical profile of CD has radically changed in the last 15 years.
The scientists discovered that CD is now showing up in a much wider age range than we previously realized. The majority of cases do not present with the classic symptoms of diarrhea and nutrient malabsorption. Instead they show up with "non-classical" issues like bloating, osteoporosis, and anemia. This is significant, because many clinicians still don't even realize that CD is associated with symptoms like these. Even when classical symptoms are present, CD can be challenging to diagnose as it can be great chameleon and masquerade as other illnesses such as the irritable bowel syndrome, Crohn's disease and more.
CD is largely a silent process, and it typically takes 6-10 years before clinicians diagnose the condition. Most concerning is the fact that only 17 percent of those with CD in the U.S. have been properly diagnosed, which makes it clear that too many people are unaware of they even have it.
Dr. Volta and colleagues also discovered that either the incidence of CD is increasing or the rates of diagnosis are increasing as they saw a steep rise in CD in the last five years. A recent EpiCast report by an international collaboration of epidemiologists seems to suggest that CD may indeed be on the rise. These epidemiologists reported that the prevalence of CD is expected to increase at a growth rate of 4.61 percent for six major geographical populations in the U.S. and Europe over the next 10 years. In the U.K. alone the prevalence of CD in children has tripled in the past 20 years.
Studies like these illustrate that CD may be more common than we previously realized and that it is still frequently misunderstood. The classical conception of CD as a relatively rare pediatric food intolerance is giving way to a much more robust understanding of the condition.
Dr. Peter Green, the director of Celiac Disease Center at Columbia University, and one of the premier celiac experts in the country notes that overall, 1 percent of the world's population He recently stated in an interview with Reuters, "Anyone can have celiac disease, it's common and underdiagnosed."
So there is little question we are seeing a large (and probably growing) population of people who are intolerant to gluten, and when they consume the substance it can trigger not only digestive symptoms but broader systemic problems.
When to Suspect CD and When to Get Tested
Those with a family history of CD are at a higher risk of acquiring this disease. Many symptoms have been linked to CD, which range from digestive discord (e.g., diarrhea, abdominal pain), neurological issues, depression, headaches, joint aches, fatigue, anemia, skin rashes, infertility and so many more. CD has also been linked to dozens of other related conditions including autoimmune disorders such as Type 1 diabetes, primary biliary cirrhosis, autoimmune thyroiditis, and others.
If you have any of these conditions, or suspect you may have celiac disease for some other reason, go to your doctor and ask to be tested.
Unfortunately the complications of untreated CD can be serious and include cancer.
Promoting awareness to health care providers and the public is the best measure to improve early detection of this disease which is curable by avoiding glutinous grains.
In the next post I will discuss non-celiac gluten sensitivity, the multibillion dollar market for gluten-free products for people who are without CD and whether there is a grain of truth to the purported hidden dangers of gluten.
Volta, U., Caio, G., Stranghellini, V. and R. De Giorgio. The changing profile of celiac disease: a 15-year experience (1998-2012) in an Italian referral center. BMC Gastroenterology. 2014. 14:194; doi:10.1186/s12876-014-0194-x.
Zingone, Fabiana, et al. Socioeconomic variation in the incidence of childhood coeliac disease in the UK. Archives of Disease in Childhood. 2015, Jan 22. pii: archdischild-2014-307105. doi: 10.1136/archdischild-2014-307105. [Epub ahead of print]