INTRODUCTION Disorders of Gut-Brain Interaction (DGBI) are common in patients with hypermobile Ehlers Danlos Syndrome/Hypermobility Spectrum Disorder (hEDS/HSD). Food is a known trigger for DGBI symptoms which often leads to dietary alterations and increasingly, nutrition support. We aimed to explore dietary behaviours and influencing factors in hEDS/HSD patients. METHODS In a cross-sectional study, patients with hEDS/HSD were recruited from Ehlers-Danlos Support UK (non-tertiary) and tertiary neurogastroenterology clinics to complete questionnaires characterising: dietary behaviours, nutrition support, DGBI (Rome IV), GI symptoms, anxiety, depression, Avoidant Restrictive Food Intake Disorder (ARFID), Mast Cell Activation Syndrome (MCAS), Postural tachycardia Syndrome (PoTS) and quality of life. We used stepwise logistic regression to ascertain which factors were associated with dietary behaviours and nutrition support. RESULTS Of 680 participants (95% female, median 39 years), 62.1% altered their diet in the last year and 62.3% regularly skipped meals. Altered diet was associated with: reflux symptoms (p<0.001), functional dyspepsia (p=0.008), reported MCAS (p<0.001) and a positive screen for ARFID, specifically fear of eating and low interest (p<0.001). 31.7% of those who altered their diet required nutrition support. The strongest predictor of requiring nutrition support was a positive screen for ARFID, specifically fear of eating (OR: 4.97, 95% CI: 2.09-11.8, p<0.001). CONCLUSION Altered diet is very common in the hEDS/HSD patients we studied and influenced by functional dyspepsia, reflux symptoms and ARFID. Those with ARFID have a four-fold increased risk of requiring nutrition support and therefore, it is paramount that psychological support is offered in parallel with dietary support in the management of DGBI in hEDS/HSD.

中文翻译：

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过度活动型埃勒斯·丹洛斯综合征的营养和饮食影响的综合评估 (CANDI-hEDS) - 一项横断面研究。

简介 肠-脑相互作用障碍 (DGBI) 在患有过度活动型埃勒斯丹洛斯综合征/过度活动谱系障碍 (hEDS/HSD) 的患者中很常见。食物是 DGBI 症状的已知诱因，通常会导致饮食改变以及越来越多的营养支持。我们的目的是探讨 hEDS/HSD 患者的饮食行为及其影响因素。方法 在一项横断面研究中，从 Ehlers-Danlos 支持英国（非三级）和三级神经胃肠病学诊所招募 hEDS/HSD 患者，以完成问卷特征：饮食行为、营养支持、DGBI（罗马 IV）、胃肠道症状、焦虑、抑郁、回避性限制性食物摄入障碍 (ARFID)、肥大细胞激活综合征 (MCAS)、姿势性心动过速综合征 (PoTS) 和生活质量。我们使用逐步逻辑回归来确定哪些因素与饮食行为和营养支持相关。结果 在 680 名参与者中（95% 为女性，中位年龄 39 岁），62.1% 的人在去年改变了饮食，62.3% 的人经常不吃饭。饮食改变与以下因素相关：反流症状（p<0.001）、功能性消化不良（p=0.008）、报告的 MCAS（p<0.001）和 ARFID 阳性筛查，特别是对进食的恐惧和兴趣低下（p<0.001）。31.7% 改变饮食的人需要营养支持。需要营养支持的最强预测因素是 ARFID 阳性筛查，特别是对进食的恐惧（OR：4.97，95% CI：2.09-11.8，p<0.001）。结论 饮食改变在我们研究的 hEDS/HSD 患者中非常常见，并受到功能性消化不良、反流症状和 ARFID 的影响。患有 ARFID 的患者需要营养支持的风险增加了四倍，因此，在 hEDS/HSD 的 DGBI 管理中，与饮食支持同时提供心理支持至关重要。