Researchers studied nearly 1,800 people with celiac disease and compared them to people without it. They found that people with celiac disease experience more tiredness, visit specialists more often, and report having worse experiences with their doctors. The study suggests that celiac disease affects people in ways beyond just stomach problems—it impacts their energy levels and how well they can do everyday activities. The findings highlight that doctors need to pay attention not just to the disease itself, but also to how it affects patients’ lives and their ability to get the care they need.

The Quick Take

  • What they studied: How celiac disease affects people’s energy levels, their visits to doctors, and their experiences with healthcare providers
  • Who participated: 1,816 people with celiac disease matched with similar people without the disease, all from a large U.S. research program. Participants were matched by age, ancestry, and sex to make fair comparisons
  • Key finding: People with celiac disease were more likely to report severe tiredness (12% vs. 8.4%), visit specialists very frequently (6.6% vs. 4.3%), and have negative experiences with their healthcare providers
  • What it means for you: If you have celiac disease, your tiredness and frequent doctor visits are real and documented. This research suggests doctors should listen better to how celiac disease affects your daily life, not just focus on the disease itself. However, this is one study and more research is needed before making major changes to how celiac disease is treated.

The Research Details

Researchers used information from the All of Us Research Program, which is a large database of health information from many Americans. They looked at people who reported having celiac disease or had it documented in their medical records. To make sure they were studying people who actually had celiac disease, they checked for genetic markers that are associated with the disease and excluded people who didn’t have these markers. Each person with celiac disease was carefully matched with someone without celiac disease who was similar in age, genetic ancestry, and sex. This matching helps researchers compare apples to apples—making sure any differences they find are due to celiac disease and not other factors.

The researchers asked participants questions about their symptoms, lifestyle, overall health, social factors, and how they access healthcare. They looked at five different survey categories to get a complete picture of how celiac disease affects people’s lives. They then used statistical analysis to figure out which symptoms and healthcare experiences were most strongly connected to having celiac disease.

This research approach is important because it looks at real people’s actual experiences rather than just laboratory results. By matching people carefully and excluding those without confirmed celiac disease, the researchers made sure they were studying the right group. This helps us understand not just the medical side of celiac disease, but how it affects people’s daily lives and their relationships with doctors.

This study has several strengths: it included a large number of people (1,816), used genetic testing to confirm celiac disease diagnosis, and carefully matched comparison groups. However, because people reported their own symptoms and experiences, there’s a possibility of bias—people with celiac disease might remember or report their symptoms differently than people without it. The study is also based on U.S. data, so results might not apply to other countries. Additionally, this is one study, so the findings need to be confirmed by other researchers before we make major conclusions.

What the Results Show

People with celiac disease reported significantly more severe tiredness than people without it—12% of celiac patients reported severe fatigue compared to only 8.4% of people without the disease. This difference was statistically significant, meaning it’s unlikely to have happened by chance.

People with celiac disease also visited medical specialists much more frequently. About 6.6% of celiac patients visited specialists 13 or more times per year, compared to only 4.3% of people without celiac disease. This suggests that celiac disease requires more specialized medical care.

When researchers looked at all the factors together using advanced statistical methods, they found that three things were most strongly connected to having celiac disease: severity of tiredness, frequency of specialist visits, and negative experiences with healthcare providers. Each of these factors independently increased the likelihood that someone had celiac disease.

People with celiac disease also reported greater difficulty doing everyday activities and more trouble accessing the care they needed compared to people without the disease.

Beyond the main findings, the study revealed that people with celiac disease experienced more functional limitations—meaning they had more difficulty with everyday tasks and activities. They also reported higher levels of difficulty in accessing healthcare, suggesting that getting appropriate medical care may be challenging for this group. These secondary findings paint a picture of celiac disease as affecting not just the digestive system, but overall quality of life and healthcare access.

Previous research has shown that celiac disease causes various health problems beyond stomach issues, including tiredness and other systemic symptoms. This study confirms and expands on those findings by showing that these effects are significant enough to be measured in a large population study. The finding about negative healthcare experiences is particularly important because it suggests that the healthcare system may not be fully meeting the needs of celiac disease patients, which hasn’t been as thoroughly documented in previous research.

This study has several important limitations to consider. First, people reported their own diagnoses and symptoms, which means there could be errors in reporting. Second, the study only included people in the United States, so the findings might not apply to other countries with different healthcare systems. Third, because this is a snapshot in time rather than following people over years, we can’t be sure whether celiac disease causes these healthcare problems or if people with these problems are more likely to seek a celiac disease diagnosis. Finally, the study can show that certain factors are connected to celiac disease, but it can’t prove that one causes the other.

The Bottom Line

If you have celiac disease, take your symptoms seriously—especially tiredness and difficulty with daily activities. Work with your healthcare team to manage not just the disease itself, but also how it affects your overall quality of life. Healthcare providers should consider asking celiac patients about their energy levels, functional limitations, and overall life impact, not just focusing on digestive symptoms. The evidence for these recommendations is moderate—this is one study that needs confirmation, but it points to an important gap in how celiac disease is currently managed.

This research is most relevant for people with celiac disease, their families, and healthcare providers who treat celiac patients. It’s particularly important for gastroenterologists and primary care doctors. People without celiac disease don’t need to change anything based on this research, but it may help them understand what celiac disease patients experience. People with suspected celiac disease should see a doctor for proper testing before making any dietary changes.

If you implement better communication with your healthcare team about how celiac disease affects your life, you might notice improvements in your care within weeks to months. However, managing celiac disease is a long-term process, and significant improvements in energy and function typically take several months to a year of following a strict gluten-free diet and working with your healthcare team.

Want to Apply This Research?

  • Track your energy levels daily on a scale of 1-10, and note which days you had specialist appointments or challenging healthcare interactions. Over time, this can help you and your doctor identify patterns and see if your energy improves with better healthcare coordination.
  • Use the app to prepare for doctor visits by writing down your symptoms, energy levels, and specific questions before appointments. This helps ensure your healthcare provider understands how celiac disease affects your daily life, not just your test results.
  • Create a monthly summary in the app showing your average energy level, number of specialist visits, and satisfaction with healthcare interactions. Share this with your doctor to help them understand the full impact of celiac disease on your life and adjust your treatment plan accordingly.

This research describes patterns found in one study of celiac disease patients and should not be used to diagnose or treat celiac disease. If you think you have celiac disease, consult with a healthcare provider for proper testing and diagnosis. Do not start a gluten-free diet before being tested for celiac disease, as this can interfere with accurate diagnosis. This article is for educational purposes only and does not replace professional medical advice. Always discuss any health concerns or changes with your doctor.