Celiac.com 08/22/2025 - In recent years, many people without a diagnosis of celiac disease have chosen to avoid gluten, often because they believe it causes them discomfort or gastrointestinal symptoms. This trend has sparked debate over whether these individuals might have a condition such as non-celiac gluten sensitivity or another undiagnosed illness. The long-term effects of avoiding gluten in people who do not have celiac disease remain poorly understood. This study, conducted in Finland, offers a rare look at what happens over 25 years to people who experienced symptoms from eating gluten but were confirmed not to have celiac disease or wheat allergy.
Study Background and Design
The study began between 1995 and 1997 with a group of adults who reported digestive symptoms after eating foods containing wheat, barley, or rye. After undergoing thorough testing, 76 of these individuals were found not to have celiac disease or wheat allergy. At that time, they were advised to return to a normal diet that included gluten. In 2021, researchers located 28 of the original participants and invited them to undergo a follow-up assessment. These individuals were compared to two control groups: one group of healthy people with no celiac disease, and one group of people with celiac disease who had not yet begun a gluten-free diet.
Health and Symptom Assessment
Celiac.com Sponsor (A12):
At the follow-up visit, participants underwent medical evaluations, blood tests to screen again for celiac disease, and completed questionnaires that measured gastrointestinal symptoms and overall well-being. Remarkably, none of the participants had developed celiac disease or any other chronic gastrointestinal condition over the 25-year period. Blood tests for celiac-related antibodies were negative for all participants.
Persistent Symptoms and Quality of Life Issues
Despite not having celiac disease, the participants reported significantly more digestive symptoms than healthy controls. Their symptom scores were also higher than those of individuals with untreated celiac disease. Many participants complained of constipation, abdominal pain, bloating, and discomfort after eating. Quality of life assessments showed that they also experienced more anxiety, lower energy levels, reduced sense of control, and worse general health.
In total, 12 of the 28 participants met the official criteria for irritable bowel syndrome, even though they had never received a formal diagnosis. Furthermore, the psychological burden was high—rates of depression among participants were three times greater than the national average in Finland. These findings suggest that the participants’ symptoms were not only physical but also emotional.
Gluten Avoidance Over Time
Interestingly, about half of the participants were still avoiding gluten-containing foods 25 years after the original study. However, there was no clear difference in symptoms or quality of life between those who continued to avoid gluten and those who did not. While the sample size was too small to draw firm conclusions, this suggests that avoiding gluten may not be the only factor influencing their symptoms.
Some participants who avoided gluten reported being monitored by doctors for their dietary habits, but none had received regular follow-up from a registered dietitian. The lack of professional nutritional guidance may have contributed to ongoing symptoms or dietary imbalances.
Possible Explanations for Symptoms
Although gluten was the original suspect in these individuals’ symptoms, the study suggests that other factors may be at play. Several participants had genetic markers that are common in people with celiac disease, which may make them more sensitive to wheat proteins even if they do not have the full disease. Others may have had non-celiac gluten sensitivity or a non-allergic food intolerance.
Another explanation involves a diet low in fermentable carbohydrates, known as a low-FODMAP diet. This type of eating pattern also reduces gluten-containing foods and has been shown to improve symptoms in people with irritable bowel syndrome. In some cases, it may not be gluten itself but other components in wheat—such as fructans—that trigger symptoms.
Psychological and Nutritional Considerations
The study also uncovered mental health challenges among participants, including elevated rates of depression and anxiety. These issues can both cause and result from chronic gastrointestinal distress, leading to a cycle of discomfort and emotional strain. The findings point to a need for more mental health support in people who experience long-term food-related symptoms, even if they do not have a diagnosed disease.
Moreover, the continued avoidance of gluten without medical supervision may have led to unintended nutritional consequences. Without proper guidance, individuals on restricted diets may lack key nutrients, which can contribute to fatigue, low mood, and other physical symptoms.
What This Means for People with Celiac Disease and Gluten Sensitivity
For those with celiac disease, this study reinforces the importance of proper diagnosis and medical follow-up. While it may be tempting to self-diagnose and avoid gluten, doing so without thorough testing can lead to uncertainty and overlooked health issues. In contrast, for individuals who are sensitive to gluten but do not have celiac disease, this study highlights the complexity of managing symptoms over time. Even after 25 years, many participants continued to struggle with gastrointestinal and emotional symptoms, often without clear answers.
Healthcare providers should be aware that people who report sensitivity to gluten need more than just testing—they also need long-term support, possibly including mental health care, nutritional counseling, and symptom tracking. Better diagnostic tools are still needed to identify non-celiac gluten sensitivity or related conditions with more accuracy.
Conclusion
In summary, this 25-year follow-up study found that individuals who experienced symptoms from eating gluten-containing foods—but did not have celiac disease—did not go on to develop the disease or other intestinal conditions. However, they continued to report more digestive discomfort and a lower quality of life than both healthy individuals and even some people with untreated celiac disease. Half continued to avoid gluten decades later, often without guidance. These findings suggest that gluten sensitivity, while not always tied to a diagnosable disease, is a real and lasting concern for many people. Addressing it requires a thoughtful, individualized approach that includes medical, dietary, and emotional support.
Read more at: nature.com
Recommended Comments
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now