Determinants of Adherence to a Gluten-Free Diet in Children with Celiac Disease (+Video)

Celiac.com 09/15/2025 - Celiac disease is a lifelong condition in which the immune system reacts to gluten, a protein found in wheat, barley, and rye. The only effective treatment is strict avoidance of gluten, known as a gluten-free diet. Although following this diet is essential to prevent symptoms and long-term complications, many children and families struggle with maintaining it over time. This study explored how well children with celiac disease adhere to a gluten-free diet, what factors influence their success, and whether counseling by a trained dietician improves adherence.

Purpose of the Study

The researchers wanted to measure how closely children with celiac disease followed their prescribed gluten-free diet, identify what helps or hinders adherence, and test if professional dietary counseling could make a difference. They compared several methods of assessing adherence, including blood tests, a detailed dietician interview, and two standardized questionnaires.

How the Study Was Conducted

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This was a prospective study involving children under 18 years of age who had been diagnosed with celiac disease and were following a gluten-free diet for at least one year. Diagnosis had been confirmed by established guidelines using both blood tests and intestinal biopsy. Each child’s adherence to the diet was assessed at the start of the study using:

• A blood test for antibodies to tissue transglutaminase
• A detailed dietician interview
• The Biagi questionnaire
• The modified Leffler questionnaire

Six months later, the same assessments were repeated. During this period, dietary counseling was provided by a trained dietician.

Study Participants

A total of 103 children participated, with a median age of 8 years. About 62 percent were boys, and the median length of time on a gluten-free diet was just under three years. Most children had the classic form of the disease, and common symptoms at diagnosis included poor growth, diarrhea, and abdominal swelling. Some participants also had other conditions such as type 1 diabetes or hypothyroidism, and a small number had a family member living with celiac disease.

Adherence at the Start of the Study

The percentage of children sticking to the diet varied depending on the method of measurement:

• Blood test: 73.8% adherence
• Dietician interview: 48.5% adherence
• Biagi questionnaire: 66.2% adherence
• Modified Leffler questionnaire: 60.3% adherence

The dietician interview tended to reveal more non-adherence than the other tools. Although a positive blood test result for antibodies usually indicated poor adherence, a negative result did not always mean that the child was following the diet correctly. In some cases, children with negative blood tests still admitted to dietary lapses during interviews.

Factors Influencing Adherence

Several factors were linked to better adherence:

• Living with a sibling or family member who also has celiac disease
• Having a mother who is well-informed about the condition and its treatment
• Receiving dietary counseling from a trained dietician at diagnosis
• Having type 1 diabetes in addition to celiac disease

Factors linked to poorer adherence included:

• Being older than 10 years
• Having been on the diet for a longer period of time

Interestingly, gender, place of residence, and socioeconomic status did not significantly affect adherence rates.

Impact of Dietician Counseling

After six months and following professional counseling, adherence improved significantly in all measurement methods. This shows that even children and families who had difficulty maintaining the diet at the beginning could make substantial progress with the right support and guidance.

Discussion of Results

This study found that many children with celiac disease do not fully stick to their gluten-free diet, and that different assessment methods can produce different results. The most accurate method appeared to be the dietician’s detailed interview, although it is time-consuming. Professional counseling, especially when given at diagnosis and reinforced during follow-up visits, played a key role in improving adherence. Education for parents was also critical, as families who understood the condition and its risks were more successful in maintaining the diet. The finding that older children and those further from their diagnosis date were more likely to lapse highlights the importance of ongoing support, especially during adolescence.

Conclusions

The study concluded that a significant proportion of children with celiac disease have difficulty following a strict gluten-free diet over time. Having family support, especially from another member with the disease, and receiving professional dietary guidance are powerful positive influences. Older children and those with a longer history of celiac disease may require more intensive follow-up and individualized support. Regular counseling by a trained dietician remains one of the most effective tools for improving and maintaining adherence.

Why This Matters for People with Celiac Disease

For families living with celiac disease, this study underscores that successfully following a gluten-free diet can be challenging, but there are proven ways to make it easier. Involving a knowledgeable dietician, increasing family and parental understanding, and maintaining regular follow-up can all help improve long-term success. These findings suggest that support should not stop after the initial diagnosis. Ongoing education, encouragement, and professional guidance can make a meaningful difference in preventing lapses that could lead to symptoms and long-term complications.

Read more at: researchgate.net

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