Celiac disease symptoms vary in patterns of persistence, severity, and subjective health in patients, according to study findings published in BMC Gastroenterology.
Some patients with celiac disease have persistent gastrointestinal (GI) and extraintestinal symptoms, despite adherence to a gluten-free diet (GFD). Researchers conducted an observational study to compare patterns of persistent symptoms with patterns of GFD adherence, aspects of QOL, and psychiatric symptoms.
The CureCeliac® research network, hosted by the Celiac Disease Foundation, conducted a survey between April 2019 and May 2020 for patients aged 18 years and older with celiac disease in the US.
The Celiac Symptom Index (CSI) is a tool used to evaluate celiac symptoms and health in the past 4 weeks. Higher CSI scores indicated a greater burden of symptoms and lower subjective health. The Celiac Dietary Adherence Test (CDAT) was used to assess GFD adherence. The researchers also used surveys to assess health-related quality of life (QOL) and disease-specific QOL.
The total sample included 523 participants, and a subsample with complete data included 317 participants. The mean [SD] age of all participants was 40.26[14.94] years, 88% were women, and 93.5% were White.
Among all study participants, 45% reported good adherence, 43% reported moderate adherence, and 12% reported poor adherence to a GFD.
A majority of participants (96.5%) reported at least 1 comorbid physical health condition, with the most common being bone or joint pain (52%), fibromyalgia or muscle pain (31%), and peripheral neuropathy (31%). A total of 23% of participants had an irritable bowel syndrome diagnosis before celiac disease diagnosis.
The researchers developed 4 profiles based on responses to CSI items:
- Profile 1: little to no symptoms and excellent subjective health (37%);
- Profile 2: infrequent symptoms and good subjective health (33%);
- Profile 3: occasional symptoms and fair to poor subjective health (24%);
- Profile 4: frequent to constant symptoms and fair to poor subjective health (6%).
Participants in Profile 4 reported poor health and the greatest symptomology for both GI and extraintestinal symptoms. Individuals in Profiles 2 and 3 had moderate overall symptomology; specifically, Profile 2 had greater extraintestinal symptoms and Profile 3 reported greater GI symptoms, physical pain, and worse subjective health.
Profiles 2 and 3 had increased abdominal pain, bloating, and partial bowel movement. Diarrhea was elevated in Profile 3, and nausea was elevated in Profile 4. Anxiety and depression were more severe among patients in Profile 4 compared with Profiles 2 and 3, but not Profile 1.
There were no significant differences between profiles for age at diagnosis, years since diagnosis, reason for diagnostic assessment, clinical characteristics, GFD adherence, or QOL. Adherence to GFD showed no significant differences when symptom items were removed from the CDAT score.
“Results suggest that lower overall symptom burden does not necessarily relate to better quality of life, and the relationship between persistent symptoms and wellbeing may be nuanced and depend on the specific symptoms and domain of quality of life assessed,” study authors noted. “Even patients with relatively low gastrointestinal symptom burden may nevertheless benefit from adjunctive treatment to address fatigue, pain, and headache, while those with other symptom profiles may not require the same.”
Study limitations include a lack of generalizability to some populations, self-reporting measures used to determine GFD adherence, and that participants in this study were self-selected.
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