I am genuinely disappointed that any celiac disease guideline would even consider “shared decision-making” around whether an asymptomatic person with confirmed celiac disease should follow a gluten-free diet.
The American Gastroenterological Association and the Society for the Study of Celiac Disease are currently seeking input on draft guidance for asymptomatic celiac disease.
And I have concerns.
Because celiac disease is not just a stomachache disease.
It is systemic. It can affect bones, iron, fertility, skin, liver enzymes, nerves, growth, fatigue, and long-term health. And one of the biggest problems in celiac disease is that patients often do not recognize their symptoms as symptoms.
People say things like:
“I’m asymptomatic. I just get headaches when I eat gluten.”
That is not asymptomatic.
That is a symptom.
But because celiac disease has been framed for so long as a digestive disease, many people assume that if they are not running to the bathroom, nothing is happening.
That is dangerous.
Take osteoporosis, for example. Bone loss can sometimes improve, but what happens if the damage is severe? What happens if the patient could have prevented it by treating the celiac disease earlier? What happens when “no symptoms” really means “no obvious digestive symptoms”?
The gluten-free diet is socially isolating. It is expensive. It is exhausting. It is hard to manage in real life.
To sum it up: it sucks.
But celiac damage is real. It can be silent. It can be widespread. And sometimes, it may not be fully reversible.
I was diagnosed in my 40s. At the time, if you had asked me, I probably would have said I was asymptomatic. Then I participated in a clinical trial with gluten challenges and learned very quickly that I was not asymptomatic at all.
My symptoms just were not what I thought celiac symptoms were supposed to look like.
That is why this matters.
When we create carve-outs that make it sound like some people with celiac disease can choose gluten-free or not, we muddy the message for everyone.
Because then the gluten-free diet stops sounding like treatment.
It starts sounding like preference.
And if it is optional for one celiac patient, many patients will reasonably ask:
“Then why is it not optional for me?”
And honestly, that is the part that hits hardest.
Because if this is all optional, then what have so many of us been doing?
All the time. The money. The effort. The social limitations. The reading labels. The calling restaurants. The packing food. The saying no. The planning ahead. The being difficult when we do not want to be difficult.
Was that all just wasted effort?
I do not think it was.
I think the gluten-free diet is an imperfect, burdensome, socially isolating treatment for a real systemic disease.
And if the evidence is uncertain in a narrow subgroup, then say that carefully.
But right now, the evidence for these narrow subgroups being safe on a gluten-containing diet is limited at best, and easily misinterpreted at worst.
Do not communicate recommendations for these subgroups in a way that makes the only treatment for celiac disease sound optional.
It is already complicated and difficult enough out there.
We do not need more confusion.
This is exactly why we need treatments beyond the gluten-free diet.
But until we have them, we should be very careful about making the only treatment we have sound like a personal choice.