You/your child are scheduled to have an endoscopy and/or biopsy. These procedures are helpful for figuring out if a person has celiac disease. In this handout, you will learn what to expect at your/your child’s endoscopy and/or biopsy.
What is Celiac Disease?
Celiac disease is an autoimmune disease in which a person cannot eat gluten (a protein found in wheat, rye and barley). In people with celiac disease, gluten damages the small intestine. Over time, the damage affects how the small intestine absorbs nutrients from food. Autoimmune diseases cause the immune system (system that fights germs and infections) to mistakenly attack healthy cells.
What are Endoscopy and Biopsy Procedures?
An endoscopy is a procedure in which a doctor looks at the digestive tract (throat, stomach and intestines) with an endoscope (a thin, flexible tube with a light and camera attached). The endoscope is guided down a person’s throat and into their small intestine. An endoscopy does not cause pain because there are no nerve endings in the lining of the small intestine.
A biopsy is a procedure in which doctors remove small pieces of tissue from the body and check them under a microscope for signs of disease or infection.
Why Do I/My Child Need an Endoscopy and/or Biopsy?
Endoscopies and biopsies are the best way to diagnose celiac disease. A gastroenterologist (doctor who treats people with disorders of the stomach and intestines) will do an endoscopy if your/your child’s blood tests or genetic tests show signs of celiac disease.
How to Prepare for an Endoscopy and/or Biopsy
Before the Procedure
- Follow the doctor’s instructions on what you/your child can eat or drink before the procedure. The stomach and intestines must be empty before the procedure. This helps the doctor take clearer pictures during the endoscopy.
- In the weeks leading up the procedure, you/your child must eat foods that contain gluten. While this might be uncomfortable, it is an important step in seeing whether symptoms get better when gluten is removed from your/your child’s diet.
- Depending on your/your child’s age, you/they will be placed under general anesthesia or under light sedation (medication to help them feel drowsy and relaxed). Children receive general anesthesia. Teens and young adults are given sedation.
- The doctor will give you/your child a pain-relieving throat spray, so you/they do not feel the endoscope when it goes down.
During the Procedure
- Doctors use an endoscope to check for signs of damage in the small intestine. They will guide the endoscope gently down your/your child’s throat until it reaches the small intestine.
- The endoscope has tiny tools attached for taking samples. Doctors will take 4-6 small samples of the lining of the small intestine to check under a microscope. The lining of the small intestine does not have nerve endings. You/your child will not feel pain when doctors take the samples.
- An endoscopy and/or biopsy usually takes 30 minutes (half an hour).
After the Procedure
- You/your child can go home when the anesthesia or sedation wears off. You/they will stay in a recovery room while it wears off. Even after a minor procedure, it is a good idea to prepare for a friend or family member to bring you/your child home.
- It is normal for you/your child to have a sore throat, feel drowsy or have bloating. These symptoms usually go away after a few hours.
How Do Doctors Treat Celiac Disease?
If the results come back positive for celiac disease…
- Follow a strict gluten-free diet under the care of a licensed dietitian. While there is no cure for celiac disease, following a gluten-free diet lets the intestine heal. Symptoms typically get better after removing gluten from your/your child’s diet.
If the results come back negative for celiac disease...
- You/your child might have another condition called gluten sensitivity (also called non-celiac gluten sensitivity, or NCGS). People with NCGS often have the same symptoms as people with celiac disease. NCGS is not an immune reaction to gluten. It does not damage the small intestine.
- It is also possible that you/your child have potential celiac disease. This means you/they might develop the disease later on.
Did You Know...?
Doctors use a system called Modified Marsh Scores to check the level of damage to the small intestine caused by celiac disease. Marsh scores range from stage 0, 1, and 2 to stage 3a, b, or c. Most doctors diagnose people with celiac disease with a Marsh score above 3.
Can I/My Child Be Diagnosed with Celiac Disease Without an Endoscopy and/or Biopsy?
There are two instances in which you/your child can be diagnosed with celiac disease without an endoscopy and/or biopsy. These include:
- Signs of dermatitis herpetiformis (also called Duhring’s disease), a red, itchy and bumpy rash caused by an immune reaction to gluten. Doctors might remove a small piece of skin near the rash and check it under a microscope.
- If you/your child show ALL of the following signs:
- Symptoms of malabsorption (when the body cannot absorb nutrients from food)
- Symptoms that go away on a gluten-free diet
- In blood tests, 10 times the typical levels of antibodies (blood proteins the body makes in response to a foreign substance) called tTg-IgA
- In blood tests, the presence of an antibody called EMA-IgA
- In genetic tests, the presence of HLA-DQ2 and HLA-DQ8 (the two most common genes related to a diagnosis of celiac disease)
Rev. 03/2021. Mass General for Children and Massachusetts General Hospital do not endorse any of the brands listed on this handout. This handout is intended to provide health information so that you can be better informed. It is not a substitute for medical advice and should not be used as treatment of any medical conditions.