If you are at the stage of a medical evaluation when your blood tests for celiac disease are positive and the doctor thinks you probably have this disorder, you will almost certainly need a duodenal biopsy. If you have suffered with intestinal trouble for a long time, you may have already had a colonoscopy and/or an endoscopy. But if this is new to you, and you are a little nervous, knowing what to expect might make things a bit easier.
The doctor who performs the test will be a gastroenterologist. If you have been experiencing abdominal pain and diarrhea, you may already be seeing a gastroenterologist. If your celiac antibodies were found on screening because you have another illness such as low thyroid, you will be referred to a gastroenterologist, who specializes in diseases of the digestive system.
The test will be done via an endoscope. This is a fiberoptic tube with a tiny camera at the end that is inserted through the mouth and esophagus into the stomach. When this is done for the evaluation of ulcers or heartburn, the doctor looks at the lower esophagus and the stomach. The stomach connects to the duodenum, which is the beginning of what is called the small bowel or small intestine. This is the area most affected by celiac disease, and this is where the gastroenterologist needs to advance his endoscope.
He or she must see the area, and then take a number of snips of tissue, called biopsies, to be looked at later. To do this, a tiny surgical instrument can be passed down through the endoscope. Any visibly abnormal areas should be biopsied, or if the lining of the duodenum looks normal, five to six different samples need to be taken. These will be submitted to a doctor called a pathologist. He will look at the samples under the microscope to see if there are abnormalities of the lining of the duodenum that look like celiac disease. This is done by the pathologist in his office at a later time, not while you are having the procedure.
Most gastroenterologists do endoscopies at day surgery centers, also called surgi-centers, or in a hospital as outpatient surgery. They are done in a setting where there are enough staff and all necessary equipment to make sure you are completely safe. While the procedure is not dangerous, there is always a chance that someone will have an unexpected reaction, for example, to the sedative that is given. The doctor will discuss other risks with you beforehand.
To get ready for this procedure, you have to stop taking anything by mouth, including water, for a period of time the doctor will tell you. If you are having the test in the morning, you will usually be told not to eat or drink anything after midnight. If you have medicines you need on a daily basis, ask the doctor if you should take them at midnight or wait until after the procedure.
Once you get to the surgery center, you will change into a hospital gown and the nurse will take what are called your vital signs. You will most likely have a couple of monitoring devices attached. Usually a clip goes on the tip of one finger that can sense the amount of oxygen in your blood, without a drop of blood or any pain. An automatic blood pressure cuff will be set to take regular readings. Electrodes for an EKG (heart tracing) will be attached. All this information will be displayed so the nurse and doctor can tell how you are doing.
You will have an IV put in one of your veins. The people who do this are experts. Most will offer to numb the area with an anesthetic they put in through a tiny needle that you can barely feel. Then they will put in the catheter for the intravenous fluid, which is bigger; there is a little more discomfort having that placed. You can decide if you just want the IV put in or you want the numbing beforehand.
You will not be given the same kind of anesthesia as you would for surgery. Most doctors will give you something to make you very sleepy. You will probably not remember the procedure. You may have an anesthesiologist (a specialist in giving anesthesia) monitor you and give you the medicine by vein, or the gastroenterologist may have a nurse do it. This really depends on where you live and the usual way endoscopies are done in your community.
Either way, once the medicine goes in, you will probably fall asleep and wake up later, after the whole thing is done. Taking snips from the small intestine is painless. The tissue lining the small intestine does not feel pain. There is also not much trouble afterwards.
Once you are fully awake and they have checked you completely, you will be allowed to leave, but you will never be allowed to drive. You must bring a driver with you to this procedure, or have someone come at the end. It is best to have someone come along with you. That way the doctor can talk to your friend or family member about what he or she found, because you may not remember. It is possible the doctor will see something when looking at the duodenum that will allow him or her to say that it looks like you have celiac disease, or the doctor may say the duodenum looked completely normal.
You will be given an appointment to follow up with the gastroenterologist. He or she will have the results of the biopsies then and can tell you if they showed celiac disease. Even normal-appearing tissue can show damage under the microscope.
You might be sleepy the rest of the day. Eventually you will want to eat. Most people feel normal by the next day.
Your doctor may have a routine that differs slightly from this description, but he or she will tell you what to expect. All-in-all this is not a difficult or painful procedure and you should not worry about having a lot of pain or trouble afterwards. You do have to be eating gluten in the weeks before the biopsies. You should discuss any concerns you have with the doctor beforehand. By the time the biopsies are reviewed, the doctor should be able to give you a firm diagnosis.