Researchers in Germany studied over 2,000 people with celiac disease to understand why some still experience symptoms even after following a strict gluten-free diet. They found that many people wait years before getting diagnosed, and most don’t receive proper nutrition counseling after diagnosis. The study shows that women, people diagnosed later in life, and those who don’t get enough information about their diet are more likely to keep feeling sick. These findings suggest that better awareness, faster diagnosis, and professional guidance could help more people feel better.

The Quick Take

  • What they studied: Why some people with celiac disease continue to have stomach problems and other symptoms even after they stop eating gluten
  • Who participated: 2,164 people with celiac disease in Germany, ranging from children to adults, diagnosed at different times between before 2012 and after 2012
  • Key finding: About 40% of people still had symptoms after being on a gluten-free diet for at least a year. Women were more likely to have ongoing symptoms, and people who didn’t get proper nutrition advice were more likely to keep feeling sick.
  • What it means for you: If you have celiac disease and still feel bad after going gluten-free, you’re not alone. Getting professional help from a dietitian and clear information about your diet may improve how you feel. Talk to your doctor if symptoms persist.

The Research Details

This was a large survey study where researchers collected information from people with celiac disease across Germany between November 2019 and October 2021. Participants answered questions about their symptoms before diagnosis, how long it took to get diagnosed, and whether they still had symptoms after following a gluten-free diet for at least one year.

The researchers divided people into groups based on their age when diagnosed (children versus adults) and when they were diagnosed (before or after 2012). This helped them see if diagnosis and care improved over time. They used statistical methods to figure out which factors were most strongly connected to people still having symptoms despite following a gluten-free diet.

The study included detailed information about what symptoms people had before diagnosis, how long the diagnostic process took, and what kind of care and counseling they received after diagnosis.

This research approach is important because it captures real-world experiences from a large group of people, rather than just studying a small group in a controlled setting. By looking at people diagnosed at different times, researchers could see whether the healthcare system’s approach to celiac disease improved over the years. Understanding which patients are most at risk for ongoing symptoms helps doctors and nutritionists provide better support.

This study is reliable because it included over 2,000 participants, which is a large sample size. The researchers carefully excluded people with incomplete information. However, the study relied on people remembering their symptoms and experiences from the past, which can sometimes be inaccurate. The study was conducted in Germany, so results may be slightly different in other countries with different healthcare systems.

What the Results Show

Before diagnosis, the most common symptoms were stomach pain (83% of people), bloating (82%), tiredness (78%), and diarrhea (71%). These symptoms are typical of celiac disease when people are still eating gluten.

One major finding was that adults took much longer to get diagnosed than children. Adults waited a median of 4.4 years from when symptoms started to when they got diagnosed, while children only waited about 1.1 years. This diagnostic delay was even longer before 2012, suggesting that awareness and diagnosis have improved in recent years.

After starting a gluten-free diet, about 60% of people received professional dietary counseling from a nutritionist or dietitian. However, 40% did not receive this professional guidance, which is concerning because proper nutrition advice is important for managing the condition.

About 40% of people still experienced symptoms even after being on a gluten-free diet for at least one year. The researchers found that certain groups were more likely to have ongoing symptoms: women were 1.8 times more likely than men to have persistent symptoms, people who had the same symptoms before diagnosis were 3.5 times more likely to still have them, and people who didn’t receive enough information about their diet were more likely to continue feeling sick.

The study found that older people at the time of diagnosis were more likely to have ongoing symptoms compared to younger people. For every 10 years of age at diagnosis, the risk of persistent symptoms increased by 11%. Interestingly, how long someone had been on a gluten-free diet didn’t affect whether they still had symptoms—meaning that time alone doesn’t guarantee improvement. The quality of care during and after diagnosis appeared to be more important than how long someone had been managing the condition.

This research confirms what other studies have suggested: that celiac disease is often diagnosed late, especially in adults. The finding that women are more likely to have ongoing symptoms aligns with previous research showing that women may have different presentations of celiac disease or may be more affected by nutritional deficiencies. The study adds new information by showing that the quality of information and professional support after diagnosis significantly impacts how well people recover.

This study asked people to remember their symptoms and experiences from years ago, which can be inaccurate. The study only included people in Germany, so results might be different in other countries. People who participated may have been more motivated or health-conscious than those who didn’t participate, which could affect the results. The study couldn’t prove that lack of counseling directly caused ongoing symptoms—only that they were connected. Additionally, the study didn’t measure whether people were truly following the gluten-free diet correctly, which is crucial for celiac disease management.

The Bottom Line

If you have celiac disease, seek professional dietary counseling from a registered dietitian who specializes in celiac disease (confidence: high). Make sure you receive clear, detailed information about following a gluten-free diet at the time of diagnosis (confidence: high). If you continue to have symptoms after one year on a gluten-free diet, talk to your doctor—you may need additional testing or support (confidence: moderate). Don’t assume that time alone will make symptoms disappear; active management and proper guidance are important (confidence: moderate).

This research is important for anyone recently diagnosed with celiac disease, parents of children with celiac disease, and people who have been on a gluten-free diet but still don’t feel well. It’s also relevant for doctors and nutritionists who care for celiac disease patients. If you’ve been diagnosed for years and still have symptoms, this research suggests you may benefit from professional nutrition counseling. People without celiac disease don’t need to apply these findings to themselves.

Most people should notice improvement in symptoms within a few weeks to a few months of starting a strict gluten-free diet. However, if you’re not seeing improvement after 3-6 months, that’s a sign to seek professional help. Complete healing of the intestines can take 1-2 years or longer, so patience is important. The research shows that having professional support from the beginning can speed up improvement.

Want to Apply This Research?

  • Track your daily symptoms (stomach pain, bloating, fatigue, diarrhea) on a scale of 1-10, along with what you ate that day. This helps identify if any foods are triggering symptoms and shows whether you’re improving over time.
  • Use the app to set a reminder to schedule an appointment with a registered dietitian who specializes in celiac disease. Document questions about your gluten-free diet to ask at that appointment. Keep a food diary within the app to ensure you’re following the diet correctly and to share with your healthcare provider.
  • Review your symptom patterns weekly to see if they’re improving. After starting professional counseling, track whether your symptoms decrease over the next 3-6 months. If symptoms aren’t improving, use the app to document this and share the data with your doctor as evidence that you may need additional support or testing.

This research describes patterns in celiac disease diagnosis and management but should not replace professional medical advice. If you have celiac disease and experience ongoing symptoms despite following a gluten-free diet, consult with your healthcare provider or a registered dietitian. Symptoms can have multiple causes, and proper medical evaluation is necessary. This study was conducted in Germany and may not fully apply to all healthcare systems or populations. Always work with qualified healthcare professionals for diagnosis and treatment decisions.