Psychological & Financial Impact of Celiac Disease

Psychiatric Disorders

The relationship between CeD and psychiatric disorders is complex and not fully understood. Anxiety, depression, ADHD and autism are common neuro-psychiatric manifestations of CeD that affect roughly 24% of adults at time of diagnosis [1].

Both biological and social factors may contribute to the high rate of anxiety and depression in CeD. Gluten consumption itself may have a psychiatric impact related to biological mechanisms such as cross-reacting antibodies, immune-complex deposition, direct toxicity and gut–microbiota–brain axis impact, though research into these mechanisms is ongoing [2].  Additional risk factors for depressive symptoms and decreased QoL with CeD include females with severe gastrointestinal symptoms and those who were diagnosed following clinical detection, as opposed to diagnosis following screening [3].

Anxiety and depression-related symptoms of CeD due to its social impact are far more clear. These may be related to avoidance of social situations that involve food due to challenges of adhering to a gluten-free diet (GFD) group or out of home settings. Increased levels of stress related to these scenarios can further exacerbate symptoms.

However, while anxiety and depression are common among patients with CeD patients, especially during initial diagnosis, psychological symptoms are also highly prevalent among those with chronic gastrointestinal conditions as a whole. It can be challenging to distinguish between CeD specific symptoms of anxiety and depression and those related to following a strict diet for any condition. Still, regardless of etiology psycho-social support is crucial when implementing and following any strict, medically-indicated diet.

With proper treatment, psychiatric conditions tend to improve after 24 months of a GFD, though rates of depression and anxiety do vary among CeD patients long-term. It’s also unclear whether CeD diagnosis improves or worsens pre-existing depressive symptoms, further highlighting the need for ongoing social and psychological support for all patients. Notably, higher levels of physical activity are inversely related to anxiety and depression in CeD [4].

Quality of Life 

Adaptation to a GFD poses diverse challenges, all of which can profoundly impact QoL. When not implemented with proper support, a GFD can be costly, time-consuming, limit access to desired foods, and strain work and travel [5]. This can impact emotional and psychological wellbeing. 

Feelings of stigmatization, isolation, anxiety, sadness, embarrassment, anger and frustration are unfortunately common. As patients navigate the challenges of their dietary restrictions in various social contexts, CeD can also strain personal relationships due to misunderstandings, ignorance among friends and family and potential social withdrawal [6]. 

Disordered Eating and CeD

Eating disorders commonly co-present in patients with gastrointestinal conditions, especially with those that require dietary management. The rate of CeD among those with an eating disorder is 1%, similar to the prevalence of CeD in the general population. However, as much as 9% of those with CeD may have an eating disorder, greater than the average rate of eating disorders overall [7].  

This high correlation between CeD and eating disorders can result from strict adherence to a GFD, which can lead to the development of disordered eating or an eating disorder. The increased risk may also be related to distress around weight gain and body image concerns after implementing a GFD. Increased concerns around body image and weight may lead to maladaptive weight control behaviors like purging, excessive restriction or other disordered eating behaviors [8].

After diagnosis, fear of potential gluten-contamination may lead to increased anxiety and disordered eating behaviors. Hypervigilance towards risk of contamination can also lead to avoidance of other foods or food groups. 

Disordered eating behaviors that are not driven by body image concerns are indicative of Avoidant Restrictive Food Intake Disorder (ARFID). There is high overlap in the prevalence of ARFID in CeD and the two share many common symptoms, making the true overlap of ARFID in CeD challenging to pinpoint. Constipation, abdominal pain, cold intolerance, lethargy, ongoing gastrointestinal issues without a clear cause and increasingly picky eating can be signs of both ARFID or CeD [4,8].

Remain cognizant that excessive restriction in CeD, either due to fear of gluten exposure or of other gastrointestinal symptoms, may suggest concurrent ARFID. Excessive restriction is important to mitigate, as it in turn increases risk for depression and lower QoL [4]. Higher knowledge of the GFD is associated with lower QoL, hypervigilance and greater feelings of limitation [5]. 

The Financial Burden of the Gluten-Free Diet

The cost of following a GFD diet must also be considered when supporting patients during CeD diagnosis and long-term management. Processed gluten-free foods are more expensive than their gluten-containing counterparts and can be of lower nutritional value due to lower nutrient and fiber content [9-13]. As much as 24% of pediatric patients with CeD experienced food insecurity since 2020 [14]. Further, lower socioeconomic status has been associated with lower adherence to the GFD, increased disease severity, longer time to mucosal healing and less normalization of Tissue Transglutaminase (TTG), IgA and gliadin IgA [15].

Conclusion

The many ways CeD can impact social, psychological and financial wellbeing is complex and intertwined. While CeD biomarkers and GFD adherence are important to monitor, individualized treatment plans are vital to appropriately guide adherence and assess nutritional status without promoting unnecessary restriction.

In treating CeD, remember to address and monitor all measures of mental and emotional health. Referral to appropriate providers and resources, such as a gluten-free food assistance program, psychologist or specialist in disordered eating, may often be warranted. Regular follow-up can provide guidance to navigate the social and emotional aspects of long-term adherence to a gluten-free lifestyle.