Newly Diagnosed Celiac Patients Getting Glutened

in Celiac, Celiac Newly Diagnosed

Silvester_Jocelyn (1) (Copy)Dr. Jocelyn Silvester
New celiac patients may ingest gluten and not realize it until they develop symptoms linked to autoimmune disease, a study reveals.

The lack of scientific data about inadvertent gluten exposure led to this research that followed 105 newly diagnosed celiac patients over six months. The study involved researchers from Winnipeg, Manitoba and the Harvard Medical School Celiac Research Program.

Their findings showed that 66 per cent of the patients suspected they’d had a recent reaction to gluten with symptoms that ranged from headaches to fatigue and diarrhea. The gluten exposures were unexpected and accidental.

On average, the new celiac patients’ symptoms came on about one hour after exposure, according to the study, published in the journal Alimentary Pharmacology and Therapeutics.

The biggest risk factor was one the patients had the least control over: eating food that had been prepared by others, either in a restaurant or in someone else’s home.

“In such instances, there may be less clear information and less control over ingredients and preparation, which means it is quite possible that this may not improve with time and experience,” says Dr. Jocelyn Silvester, one of the study authors who was with the University of Manitoba. (She is now the director of research with the celiac disease program at Boston Children’s Hospital.)

Celiac Patients’ Lingering Symptoms

This small but important study was published in 2016. Since then, more studies are finding celiac patients having persistent symptoms and often damage to the intestinal lining, despite following a gluten-free diet. The nonprofit Beyond Celiac summarizes that “even after two years on the gluten-free diet, 30 to 60 percent of adults with celiac disease have persistent gut damage.”

In 2022, researchers undertook a study based on five years of data on celiac patients seen at the Mayo Clinic’s celiac center. In each of those years, about 60 percent of patients said they experienced celiac symptoms. Three-quarters of that group reported the symptoms remaining through the first year after diagnosis.

However, 34 percent of the symptomatic patients reported symptoms at all specialist appointments over the five years.

Research continues into what drives the persistent symptoms in this disease. In addition to gluten exposure, some celiac patients have issues with low-level intestinal inflammation or nutrient malabsorption. Others can have have what experts call “non-responsive” celiac disease.

Article updated: August 2023.