Why Celiac Disease Is Underdiagnosed

The vast majority of adults and children with celiac disease remain undiagnosed. This digestive disease affects men, women, and children of all backgrounds. Raising awareness of the symptoms and when you should seek professional help is a good way to help people who may have the condition. It’s important to get a diagnosis so you can start treatment and get relief from celiac disease.

An estimated 1 in 133 Americans has celiac disease, and here at Illinois Gastroenterology Group, it’s our goal to improve knowledge of the digestive disorder. While we routinely diagnose and treat patients with celiac disease, we remain aware that many Americans have the condition and don’t know it. 

We’ve put together a guide to help patients better understand the importance of seeking professional help for digestive problems they may otherwise ignore or simply put up with.

What is celiac disease?

A diagnosis of celiac disease means your immune system reacts abnormally to the presence of gluten, an extremely common protein found in wheat, rye, and barley. When a person with celiac disease eats foods that contain gluten, their immune system treats it as a foreign invader and launches an attack.

This ongoing immune attack damages the small intestine and destroys intestinal villi -- tiny fingerlike protrusions responsible for absorbing nutrients. Following a strict gluten-free diet is currently the only treatment for celiac disease.

The effects of celiac disease

Celiac disease can cause short-term and long-term health problems. Over the short term patients may experience bouts of:

Over time, intestinal damage from celiac disease can cause anemia, fatigue, and nutrient deficiencies that lead to weight loss and other health issues.

Celiac disease affects areas of the small intestine

An intestinal biopsy is used to confirm a diagnosis of celiac disease. To perform the biopsy, your gastroenterologist takes several samples of tissue from your small intestine and sends it to a lab for examination. This is the gold standard for diagnosis.

The small intestine is where most of the food you eat is absorbed, and it’s roughly 22 feet long. Because damage from celiac disease occurs in patches along the small intestine, it’s possible to miss signs of celiac disease, leading to a false negative.

Taking more than one sample for biopsy improves accuracy of diagnosis.

Too few patients seek help with symptoms

In the United States, patients are seeking their gastroenterologists about digestive symptoms at a lower rate and are more likely to try to deal with their symptoms on their own. Common celiac symptoms are easy to mistake for symptoms of other conditions, such as irritable bowel syndrome.

Blood testing isn’t perfect

The journey to a celiac diagnosis usually begins with discussing your symptoms with your doctor, and getting blood tests if your doctor suspects that your symptoms may be a warning sign of celiac disease. Blood tests for celiac disease look for antibodies specific to celiac.

In a perfect world, the blood tests would point in the right direction 100% of the time, but this isn’t always the case. Some patients may test negative for celiac-specific antibodies and still have celiac disease.

If there is high suspicion of celiac disease and your blood tests are negative, we may suggest that you undergo an intestinal biopsy.

If you’re experiencing persistent digestive symptoms we can help. A comprehensive evaluation will help get to the root of the problem. 

To learn more and to schedule an appointment with one of our gastroenterologists, call our office to schedule an appointment at one of our offices in Elgin, South Elgin, or Lake in the Hills, Illinois.

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