Learn how celiac disease is diagnosed
Only a biopsy lets you know for sure
If screening tests and/or symptoms suggest celiac disease, your doctor needs to establish the diagnosis by obtaining tiny pieces of tissue from the upper part of your small intestine to check for damage.
This is done through a procedure called an endoscopic biopsy. Examining a biopsy sample of the small intestine is the only way to diagnose celiac disease.
What is a biopsy?
A biopsy involves a long, thin tube with a small camera on the end. This tube is called an endoscope. After giving you a sedative and other medication (or general anesthesia in children), the doctor eases this tube through your mouth and stomach into your small intestine. The doctor then takes samples of the tissue using instruments passed through the endoscope.
Let’s take a closer look at the steps involved in the biopsy.
Step 1. Inserting the tube
The doctor inserts the tube into your mouth, down your throat, and into your esophagus—the long, hollow passageway that connects your throat to your stomach.
Step 2. Finding your intestine
When the tube reaches your stomach, the doctor uses the camera to find the duodenum—the entryway into your small intestine—and inserts the tube there. As the tube is making its way to your small intestine, the camera on the end sends a video image to a monitor in the procedure room. On the monitor, your doctor can visually assess inflammation due to conditions such as gastritis or acid reflux.
Step 3. Examining the intestine
In your small intestine, your doctor examines the entire length of the duodenum, the area affected by celiac disease. However, at the time of biopsy, the duodenum appears normal in many people with celiac disease. This is why the surgical removal of tissue is so important, for it is only under a microscope that a definitive diagnosis of celiac disease can be made.
Step 4. Removing some tissue
Your doctor inserts a tiny surgical instrument through the tube and into your small intestine. Working with a nurse, your doctor will take tissue samples from two or three areas of your small intestine. The biopsy samples are taken by grasping very small sections of tissue and slicing them gently away from the walls of your intestine. The samples must be properly oriented for accurate review by a skilled pathologist.
Step 5. After the biopsy
Results of your biopsy will come from a skilled pathologist and will confirm if you have celiac disease. There are no nerve endings in the intestine, so this procedure does not cause pain in the gut. Some people experience a sore throat, but most have no memory of the procedure.
Does my child really need this procedure?
This procedure is necessary, even for children. It’s the only way to know for sure whether your child has celiac disease. Only in rare, selected cases will your doctor find that the evidence from your child’s history, laboratory tests, and physical examination is enough to finalize the diagnosis without the biopsy. Again, this is only in very rare circumstances and by doctors who have extensive expertise in celiac disease.
While it is understandable for parents to be concerned about this procedure, there are several important facts to consider, including:
- The short length of the procedure (10 to 15 minutes) while your child is under general anesthesia and closely monitored
- The difficulty in diagnosing celiac disease if your child has not eaten gluten for a long period
- The tendency to not take a gluten-free diet seriously without a biopsy confirmation
You can read about these and other considerations in greater detail in the appropriate factsheet (see below).
For more information
Learn more about what a biopsy is, including considerations for a young child, in the Diagnosis of Celiac Disease Factsheet.