The Endoscopy Experience

They want to scope you. Or you’ve already been scoped, and they want to do it again. Either way, the upper endoscopy is a key moment in celiac life.

Here’s what to actually expect.

Why Endoscopy?

For Diagnosis

Blood tests suggest celiac. Endoscopy confirms it:

• Direct visualization of the small intestine
• Biopsy samples for microscopic analysis
• Definitive diagnosis

For Follow-Up

Some doctors recommend follow-up endoscopy:

• To confirm intestinal healing
• To check for complications
• To verify diagnosis if initial was unclear

When It’s Required

Current guidelines generally require biopsy for adult diagnosis. Blood tests alone usually aren’t enough (though this is evolving, especially for children with very high antibodies).

Before the Procedure

The Prep

Surprisingly simple compared to a colonoscopy:

• No food after midnight (usually)
• Clear liquids may be allowed until a few hours before
• Stop certain medications as directed
• Arrange transportation (you can’t drive after sedation)

That’s it. No terrible bowel prep. No days of clear liquids.

What to Bring

• Photo ID
• Insurance cards
• Someone to drive you home
• Comfortable clothes
• Low expectations for the rest of the day

The Important Rule

Do NOT go gluten-free before your endoscopy.

If you’ve already eliminated gluten, your intestines may be healing. The biopsy might miss the damage. You need to be eating gluten for accurate results.

If you’ve already gone GF:

• Discuss with your doctor
• You may need a gluten challenge (eating gluten again for weeks before the test)
• This is miserable but sometimes necessary for diagnosis

The Day Of

Arrival

You’ll check in, change into a gown, and get an IV placed.

The IV is for sedation, you won’t be fully awake during the procedure.

The Waiting

There’s usually waiting. Bring something to occupy your mind (though they may take your phone).

Try to relax. This is routine for them, even if it’s not for you.

Right Before

The nurse and anesthesiologist will check in. You’ll meet the gastroenterologist (if you haven’t already). You’ll confirm your identity and the procedure approximately seventeen times.

Then they’ll wheel you in.

The Procedure Itself

What Happens

You’ll receive sedation through your IV. Within seconds, you’re drowsy or asleep.

While you’re out (or mostly out):

• A thin, flexible tube (endoscope) goes through your mouth
• Down your esophagus
• Through your stomach
• Into the duodenum (first part of small intestine)

The doctor looks around and takes small tissue samples (biopsies). The whole thing takes 15-30 minutes.

What You Experience

Usually: nothing. The sedation means you don’t feel or remember the procedure.

Some people have vague awareness but no pain. Some remember nothing at all.

You’ll wake up in a recovery area, possibly mid-sentence about something random. That’s the sedation talking.

After Effects

Immediately after:

• Grogginess (plan for several hours)
• Slight sore throat (normal)
• Bloating (air from the procedure)
• No driving until the next day

Most people feel fine by evening. Some take the full day to recover.

Getting Results

The Biopsy Report

Results take a few days to a week. The pathologist examines your tissue samples for:

• Villous atrophy (flattening of intestinal villi)
• Increased intraepithelial lymphocytes
• Crypt hyperplasia

These findings, combined with blood tests and symptoms, confirm celiac disease.

The Marsh Scale

Biopsy results are often reported using the Marsh classification:

• Marsh 0: Normal
• Marsh 1: Increased lymphocytes only
• Marsh 2: Lymphocytes plus crypt changes
• Marsh 3: Villous atrophy (definite celiac) : 3a: Partial : 3b: Subtotal : 3c: Total villous atrophy

Marsh 3 is classic celiac. Marsh 1-2 can occur in early celiac or other conditions.

What If It’s Negative?

A negative biopsy doesn’t always rule out celiac:

• Were you eating gluten beforehand?
• Could the damage be patchy (missed by sampling)?
• Were enough samples taken?

Discuss with your doctor. Sometimes repeat testing is needed.

Follow-Up Endoscopies

Are They Necessary?

Practices vary. Some doctors recommend repeat endoscopy:

• 1-2 years after diagnosis to confirm healing
• If symptoms persist despite GF diet
• If concerns about compliance or complications

Others rely on blood tests and symptoms for follow-up.

What to Expect

Same procedure. Hopefully showing healed intestines, or progress toward healing.

If You Haven’t Healed

Don’t panic. Healing takes time, especially in adults:

• Some take 2+ years
• Hidden gluten exposure is common
• Certain people heal more slowly

Work with your doctor to identify any issues.

My Experience

The first endoscopy was anxious. The procedure itself was nothing, I don’t remember it at all. Woke up groggy, ate crackers (ironic), went home.

The waiting for results was the hard part. When the confirmation came, it was relief mixed with grief. The procedure itself was the easy part.

A Prayer Before Procedures

Lord, I’m nervous about what’s ahead.

Be with the doctors and nurses. Guide their hands. Help them see what they need to see.

Give me peace in the waiting. Give me clarity with the results. Whatever they find, help me face it with You.

Amen.

The Bigger Picture

An endoscopy is one moment. It confirms what’s happening inside you, information you need to move forward.

It’s not pleasant, but it’s not terrible. It’s necessary.

And once it’s done, you have answers. That’s worth the discomfort.