Why You Could Have Celiac Disease Without Knowing It

By Brian Ciampa, MD

Celiac disease is an autoimmune disorder affecting at least three million Americans, but it can be a difficult illness to pin down without proper testing.  The latest studies now estimate that 83% of people with celiac disease are going undiagnosed or misdiagnosed.   Here’s why:

In general, celiac disease causes damage in the small intestine when gluten - a protein found in wheat, rye, oats and barley – is consumed.   The most common symptoms include abdominal pain, diarrhea, bloating, and lactose intolerance.  But many other patients experience more vague symptoms such as vitamin and nutrient deficiencies, anemia and weight loss.  Unfortunately, these symptoms mirror several other illnesses. 

Very often patients who are eventually found to have celiac disease are initially mislabeled with Irritable Bowel Syndrome (IBS) or have not had proper testing when their symptoms were discussed with a health care practitioner.  What’s more, once their symptoms become chronic, some patients tend to stop seeking care and just live with the pain and discomfort.  Ironically, in most cases, following a gluten-free diet would heal their existing intestinal damage and stop most of their symptoms within weeks.

Seeing a specialist or highly-trained health care provider is the key to a proper diagnosis.  It’s always crucial to let your practitioner know your symptoms and what triggered your symptoms.  After that, your doctor will want to run some tests to find out what is causing the problem.  Fortunately, there are several tests available although all may not be necessary:

  • Blood test
  • Endoscopy
  • Gluten challenge
  • Genetic testing
  • Biopsy

Of course, if you’re found to have celiac disease the best way to manage it is to avoid gluten.  Reading the list of ingredients on all the foods you consume is a must.  In addition to painful symptoms, continued exposure to gluten can also lead to serious complications - including lymphoma and gastrointestinal cancers. Lifelong avoidance of gluten is also important to prevent complications like nutrient deficiencies.  There are also countless hidden sources of gluten, which can make strict adherence to a gluten-free lifestyle difficult.  So, it is crucial for people with celiac disease to work closely with a knowledgeable dietitian who can help to eliminate gluten from the diet. 

The good news is that increasing varieties of new products on the market are completely gluten-free.  In addition, multiple restaurants these days offer gluten-free choices.  Food manufacturers are creating more gluten-free possibilities, while people who have been living with celiac disease for several years are sharing recipes and experiences online.  More and more gluten-free options are being made available every day, which makes it easier for people with celiac disease to live fuller lives. 

More resources: 

Capital Digestive Care’s Celiac Disease Fact Sheet

Gluten Free Diet