Snark Alert 🚨

This week, the Celiac Disease Foundation shared research showing that many people with celiac disease are not getting follow-up endoscopies.

Do you know the #1 reason?

“Nobody told them they needed one.”

Honestly?

I believe it.

Many of you have told me the same thing… diagnosed, told to go gluten-free, and then… nothing.

No follow-up plan.
No discussion about healing.
No conversation about repeat testing.
No roadmap.

And that raises a whole lot of uncomfortable questions…

Why?

Are doctors uninformed about recommended celiac follow-up?

Do some doctors simply not know enough about celiac disease to have this conversation?

Are repeat endoscopies not being discussed because there’s no medication to prescribe?

Does the fact that celiac disease disproportionately affects women play a role?

When patients do ask for repeat care… are they being brushed off?

Do patients even know they’re supposed to ask?

Because here’s the truth:

It is completely unacceptable that people with an autoimmune disease requiring a lifelong medical diet are being sent home with “just don’t eat gluten” and little else.

And here’s where it gets even more interesting…

We’re moving toward a future where some people may be diagnosed without an endoscopy at all—triple-positive bloodwork, emerging no-gluten-challenge testing, better diagnostics.

Okay… great.

But then what?

How do we know how damaged the small intestine was?

How do we know if healing actually happened?

How do we know if treatment is working?

There are holes in the celiac diagnosis system.

There are even bigger holes in long-term follow-up.

And if the answer to all of this is simply…

“Nobody told them.”

Then I have a bigger question:

Who exactly dropped the ball?

Because celiac patients are doing the hard part every single day…

Reading labels.
Asking questions.
Skipping events.
Paying more for food.
Living with the social, physical, and financial consequences.

The least the medical system can do…

…is show up after the diagnosis.

Were you ever given a real follow-up plan for living gluten-free in a gluten-covered world?