I’m struggling.

By all objective measures, my celiac disease appears well controlled. My digestive system had healed per my last endoscopy in 2020, and my celiac antibodies were negative as of May 2026.

The last time I had a known celiac reaction was over two years ago. By known celiac reaction, I mean I vomit within two hours of exposure. I know this because I did gluten challenges in a clinical trial in 2018–2019.

Under draft guidance put forth by the AGA and SSCD, asymptomatic celiac patients would work with their doctor to determine if a gluten-free diet is right for them.

So, could I return to a gluten-containing diet?

Now before you panic, this is a thought I’ve had often over the years.

Do I really need to be on a gluten-free diet? Do I still have celiac disease?

A Bud Light on a boat in the middle of a lake in middle Georgia on a hot summer day sure sounds nice. Or thick onion rings next to a burger on a fluffy gluten-filled bun that doesn’t fall apart when you get halfway through the burger.

I could avoid the side-eye and additional cost of living gluten-free.

But what stops me is the potential consequences of failing at my gluten-free diet.

A Minnesota study followed 9,133 healthy young adults whose blood samples were collected between 1948 and 1954. Researchers tested for tissue transglutaminase antibodies, then used endomysial antibodies to confirm celiac disease. During 45 years of follow-up, undiagnosed celiac disease was associated with a nearly four-fold increased risk of death.

In 2026, researchers reported that celiac patients had a nearly three-fold increased risk of needing a solid organ transplant, including a more than seven-fold increased risk of liver transplant and nearly two-fold increased risk of kidney transplant.

But the gluten-free diet is not harmless either.

A 2025 study highlights the other side of this issue: gluten-free diet adherence, depression, and nutrient intake remain real concerns for people with celiac disease.

My point here is that the body of evidence is overwhelming that having celiac disease can create long-term adverse health outcomes.

The gluten-free diet mitigates many of these risks, but it can also create risks like disordered eating, social isolation, nutritional concerns, and more.

So, why are the AGA and SSCD considering giving asymptomatic patients a choice in implementing a gluten-free diet?

It has thrown everything I know and believe about celiac into a tailspin, and I am truly questioning everything I know to be true about being gluten-free.

References / context:

AGA/SSCD public comment survey on draft guidance for asymptomatic celiac disease:
https://www.research.net/r/asympt_celiac

AGA announcement:
https://gastro.org/news/open-for-public-comment-aga-sscd-asymptomatic-celiac-disease-guideline/

Rubio-Tapia et al. Increased prevalence and mortality in undiagnosed celiac disease. Gastroenterology. 2009.
https://pmc.ncbi.nlm.nih.gov/articles/PMC2704247/

Doyle et al. Risk of solid organ transplantation in individuals with celiac disease: a nationwide cohort study. Clinical Gastroenterology and Hepatology. 2026.
https://www.cghjournal.org/article/S1542-3565(26)00395-2/abstract

Shushari et al. Adherence to a gluten-free diet, depression, and nutrient distribution in participants with celiac disease. Nutrition. 2025.
https://pmc.ncbi.nlm.nih.gov/articles/PMC12779287/