A friend’s son was diagnosed with celiac disease about three years ago.

It was a completely unexpected diagnosis.

He wasn’t growing. He already had a diagnosis of Hashimoto’s thyroiditis, and his endocrinologist was struggling to get his thyroid medication stable. The doses kept creeping up and nothing seemed to make sense.

So they ran more tests.

And there it was: celiac disease.

He qualified for what doctors call a “triple positive” diagnosis — elevated TTG antibodies, positive EMA antibodies, and the genetic markers. Because of that, his mom chose to skip the endoscopy and move directly to the gluten-free diet.

What happened next was something I rarely see.

The entire family — all seven of them — went gluten free in solidarity with their twelve-year-old.

After about a month most of the family returned to eating gluten again, but mom noticed something interesting.

She felt better gluten free.

So she stayed gluten free too.

All of the kids in the family are adopted, so the siblings were tested for celiac disease as well. Every single one of them tested negative.

For a while everything was going smoothly.

Until high school happened.

Recently the teen went to something called a “flour party.”

Yes. Exactly what it sounds like.

Teenagers throwing flour at each other.

Before the party his mom and I talked about it for a long time. We went back and forth about the pros and cons of letting him go. Ultimately, we decided he should be allowed to make the choice and understand the risk.

Unfortunately, we ran head-first into one of the classic celiac complications.

He went to the party.

He got covered in flour.

And afterward?

Nothing.

No stomach ache.

No vomiting.

No fatigue.

No obvious symptoms.

From his perspective, the conclusion was obvious:

Maybe gluten isn’t really a problem.

Since then, he’s been caught eating gluten more than once.

And honestly… I get it.

He’s 15 years old.

Long-term consequences are not exactly the top priority for most teenage boys.

But his mom is worried — and for good reason.

We talk a lot in the celiac world about the potential long-term risks:

Malnutrition Osteoporosis Increased risk of certain lymphomas Chronic inflammation and autoimmune complications

At the same time, I sometimes find myself wondering about something else.

If the average person with celiac disease goes 10 years before diagnosis, what does that actually mean for long-term risk?

Because I think about my own life.

Looking back, there were signs.

Beer — cheap and plentiful in college — was my drink of choice. I was always drunker and sicker than my friends after a night out.

Later, in my early working years when money was tight, I basically lived on pasta, zucchini, and squash because it was cheap.

My digestive system was a mess at the time.

But I didn’t know it.

I even lost a bunch of weight during that period and assumed it was because I was “eating healthy.”

In reality, my body probably wasn’t absorbing nutrients properly.

My weight has fluctuated my entire life in ways that never made sense based on what I was eating. Digestive issues were constant — but I thought they were normal.

Now I know they weren’t.

Which raises a question I still can’t fully answer:

Did I have celiac disease my entire life without knowing it?

To be fair, it’s not a crazy possibility.

Celiac disease was thought to be extremely rare in the United States until the early 2000s. Doctors simply weren’t looking for it when many of us were growing up.

Which leads me to the bigger point.

Celiac disease is weird.

We know exactly what causes it.

We know how to treat it.

And yet…

Diagnosis still takes years for many people. Symptoms vary wildly from person to person. Some people feel terrible after exposure. Others feel nothing at all.

We have a disease that we understand scientifically — but experience in completely unpredictable ways.

And sometimes that unpredictability makes it really hard for people — especially teenagers — to believe the rules still apply to them.