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Half on Gluten-Free Diet are Overly-Restrictive, Survey Shows

Home / Noticias sobre investigación / Half on Gluten-Free Diet are Overly-Restrictive, Survey Shows
A woman looking in a fairly empty fridge. There's some fresh fruit and vegetables, but nothing else.

By Bailey Arman

Research funded by Beyond Celiac and recently published in Nutrients found that half of people on the gluten-free diet are overly restrictive, potentially avoiding foods they don’t need to. Of all respondents, about 10% weren’t restrictive enough, and the remaining 40% hit the sweet spot of understanding the gluten-free diet—picking the right foods to avoid, no more and no less.

In short, only 2 out of 5 people who eat gluten-free understand the diet. 

Results from the same survey revealed those on the gluten-free diet had higher levels of anxiety and depression compared to the average person. The data also suggests those who don’t follow the gluten-free diet well have more depressive symptoms.

Not Just Celiac Disease

The authors of the research work at a clinic in Sheffield, United Kingdom (UK), where they treat patients who experience symptoms after eating gluten, a protein found in wheat, barley, and rye.

Many of these patients have enfermedad celíaca, a chronic autoimmune disease, which causes their immune system to attack the small intestine after eating gluten.

The clinic treats patients with other conditions, too, among them non-celiac gluten sensitivity and neurological gluten-related disorders (NGRDs), such as:

  • Ataxia—symptoms include difficulty with walking, balance, and coordination 
  • Neuropathy—symptoms include weak, painful, tingling, or numb body parts, often in the hands or feet 
  • Encephalopathy—symptoms include severe headaches and cognitive issues

Someone with an NGRD can also have celiac disease—but anyone with any of these conditions alone has the same treatment: a strict, life-long gluten-free diet. It’s the only way to relieve their symptoms. 

This team of UK researchers previously published data suggesting that patients with NGRDs, including celiac disease, can experience damage to brain cells after ingesting gluten. They also showed that when patients strictly follow the gluten-free diet, they can achieve brain functioning similar to that of healthy people.

Because of these findings, the researchers wanted to know how well patients understand the gluten-free diet (GFD), how well they follow it, and what they may need help with to eat safely.

How the Study Was Done

The researchers mailed questionnaires to clinic patients who had tested positive for gluten-related antibodies and had neurological symptoms, like headaches, dizziness, or trouble focusing. Respondents gave information about their diagnoses, symptoms, mood, and how well they understand and follow a gluten-free diet. They also took a quiz about the gluten-free diet. 

Out of 225 respondents:

  • 65.8% had gluten ataxia
  • 18.9% had gluten encephalopathy 
  • 15.3% had gluten neuropathy

Of the 225 respondents, 40.6% also reported having celiac disease.

What the Data Revealed

Understanding the GFD; Half are Hypervigilant

Based on self-reported data, the researchers estimated that about 83% of respondents adhered to the gluten-free diet. However, when the researchers quizzed participants on which foods contain gluten, only 39.5% of respondents had perfect results, identifying only wheat, barley, and rye as foods to avoid.* About 10% of respondents missed at least one of those.

Most remaining participants—about 50% of all respondents—were overly cautious, identifying more than just wheat, barley, and rye as foods to avoid. While this does mean they’re adhering to a gluten-free diet, they may be restricting themselves more than necessary. 

The researchers also asked participants how well they think they follow the GFD. When comparing these results to the 10% of respondents who failed the food quiz, about 6% of participants believe they strictly adhere to the GFD, but may actually be eating gluten.

*Note that oats were not included as an option in the test, as some patients and healthcare professionals consider them to be a gray area for gluten-free safety. 

Comparing Symptoms in CD and NGRD; Depression and Anxiety Common

Participants with celiac disease reported more abdominal symptoms, more irritability, and more severe symptoms overall compared to participants with an NGRD but not celiac disease. 

Across all respondents, the researchers found high rates of symptoms associated with depression and anxiety. Survey respondents reached the threshold for an anxiety diagnosis twice as often as the general population of the UK, and depression three times as often. 

Connections between Symptoms and Following the GF Diet

The researchers found that those who report more severe symptoms after eating gluten were more likely to adhere to the gluten-free diet. Although this may seem obvious, it’s important to have data on who may not follow their treatment plan—and why—so healthcare professionals can better monitor and support their health. 

The researchers also found that patients who adhered to the GFD had significantly lower depression scores—though it’s unclear if one causes the other. Does following the GFD lower depression, or does depression make it harder to follow a GFD? Is there something else affecting this relationship? The researchers aren’t sure and recommend more study to figure it out.

Interestingly, there was no connection between adherence and anxiety. 

Why This Matters

To date, there is very little information on NGRD patients, NGRD symptoms, adherence to a GFD, and how these factors interact. The data from this study could guide how healthcare workers educate and treat people, critical for patients who, as previously noted, can suffer damage to brain cells when they eat gluten. 

Main takeaways include:

  • This research suggests NGRD patients who have milder symptoms; do not have GI symptoms; or are not diagnosed with celiac disease may not follow the GFD as strictly. These three groups may benefit from additional, targeted education on the importance of following a GFD. 
  • Given the relationship between adherence and depression, healthcare professionals may want to closely monitor depression and overall mood of patients who don’t follow a GFD strictly.
    • Healthcare professionals may also want to ask patients if there are specific reasons why they are struggling with the GFD. 
  • Half of those on the GFD may be overly restrictive, denying themselves foods that may actually be safe. Further research is needed to understand why. 

Moving Forward

With the right guidance and support, those struggling with NGRDs can enjoy functional health again. With proper education, healthcare workers can help get them there. For resources, check out:

If you’re a patient struggling with the gluten-free diet, check out our resources:

We also encourage you to speak with a dietitian who is familiar with the gluten-free diet, if possible.

Limitations

  • While self-reported data can provide insight into how a patient understands their disease, treatment, and the burden of both, it can also be skewed by personal biases. Different participants may interpret the questions differently or rate their feelings on different mental scales. 
  • In the same vein, the authors acknowledge that self-reported data is considered to have poor experimental sensitivity compared to physical test results—in other words, a respondent saying they have a diagnosis is less reliable than a blood test result showing they have the condition.  
  • The data is from one center in the UK, so the findings may not be representative of people elsewhere. 
  • Because this study is the first of its kind, the authors note the data is exploratory, and further research is needed to comb through the many associations among diet, mental health, and symptoms of NGRD patients.