Endoscopy Question:

[Simona19]

Is there any difference between regular upper endoscopy and capsule endoscopy? Do you need to have the regular endoscopy to be diagnosed with celiac disease, or the capsule endoscopy is enough?

[Emilushka]

In a regular upper endoscopy, the patient is put under "twilight sedation" (you're technically not unconscious, but you don't remember it and you're drowsy the whole time). A camera is put through the mouth, down the throat, through the stomach, and into the upper small intestine. This allows some looking around and also allows for biopsies to be performed. The physician controls the camera the whole time.

In a capsule endoscopy, a little capsule with a camera in it is swallowed. The patient is awake as per normal for the entire procedure. The camera-capsule goes through the entire GI tract, taking pictures at random the whole time. The physician does not control which pictures are taken when (except to program the thing ahead of time) and no biopsies are taken.

The traditional "gold standard diagnosis" for Celiac Disease (which is being dropped by docs who know what they're doing because it's so unreliable) is to get the regular upper endoscopy and rely on the microscopic analysis of the biopsies taken. There are some things you can see even with the naked eye through the camera (or in the pictures from the capsule) that are extremely typical of Celiac, but it's not the "gold standard". However, there are lots of people who end up with normal biopsies but positive antibody panels, or people who end up with negative antibody panels but a positive biopsy sample. All the tests currently available for diagnosing Celiac are imperfect and that's why good docs will really hunt down the answer for you using any means necessary. For those who are really suffering, a trial gluten-free diet may be the only way to get an answer, even after a negative workup.

It's frustrating to doctors because many of them rely on tests to have confirmation. They often just don't have the balls to diagnose without a confirmatory test, or may be bound by insurance company billing regulations. Also, doctors like ANSWERS. They are trained to be that way. For older doctors, there's less awareness of Celiac and how to diagnose it responsibly because most of the research and improvements in the testing has been recent. Docs are supposed to keep up with the times, but Celiac's is lower on the list than something like breast cancer so many docs seem to have missed out on the information updates recently.

It's frustrating for patients because while all this testing is going on, you're still suffering. You wait for results, but it's hard to know what the results mean unless they're clearly positive. And often they contradict themselves or are unclear or are negative. Sometimes the gluten-free diet is the only way to get a good diagnosis, and sometimes the docs aren't smart enough to take that as the evidence it is. Docs are far from perfect, and sometimes they're just plain bad. Having a bad doc or a doc who doesn't understand is even MORE frustrating for a patient who's been suffering without a diagnosis or effective method of therapy.

I waxed a little poetic, but I hope at least the stuff about endoscopies was useful to you.