There are two sides to this conversation: the cost of the gluten-free diet and the cost of untreated celiac disease.

And both matter.

The gluten-free diet is difficult to implement. It is expensive, socially isolating, and carries a heavy mental load.

It can also create nutritional issues. Gluten-free diets are often low in fiber, B vitamins, and other micronutrients. Gluten-free processed foods can be higher in sugar and fat to replace the missing gluten.

That matters.

I do not want to minimize how hard this treatment is.

But not implementing the gluten-free diet has costs too.

Untreated celiac disease has been associated with higher overall mortality risk, increased risk of lymphoma, osteoporosis, malnutrition, and other long-term complications.

That matters too.

And let’s not forget the massively inadequate follow-up most celiac patients receive.

If there is no follow-up, there is no way to know if things are getting better or worse.

I say all the time: I’m not the gluten police.

I am not going to judge someone if they make different food choices than I do.

But when organizations that help shape the treatment of gastrointestinal diseases suggest that a gluten-free diet may not be required for some celiac patients, it feels deeply unsettling.

Because celiac disease will not usually make you suddenly drop dead.

But it can hurt you slowly.

And the gluten-free diet, flawed as it is, is the only treatment we currently have.

I likely had celiac disease my whole life. The signs and symptoms were there long before celiac disease was a disease I knew existed.

A lot of damage may have existed for a long time before I was ever diagnosed.

Right now, I have no additional autoimmune diseases and no other major issues beyond a broken metabolism. I hope to live for a lot longer — and my long-undiagnosed celiac disease may hinder that goal.

We do not know what if any long term damage has occurred.  We do not know if my gluten free diet has halted disease progress that has yet to reach clinical significance.  We just don’t know.

That is the hard part.

The disease is real.

The diet is hard.

The follow-up is inadequate.

The risks are not imaginary.

And until there is a better treatment, I am hedging my bets.

I plan to stay gluten-free.