Resources for Healthcare Providers Supporting Food Insecure Families with Celiac Disease

Studies have shown that individuals with celiac disease are at a higher risk of experiencing food insecurity compared to the general population. The additional cost of gluten-free foods, which can be substantially higher than their gluten-containing counterparts, is a major contributing factor.

• A recent study from Boston Children’s Hospital (BCH) found that 24% of pediatric celiac patients experienced general food insecurity during the COVID-19 pandemic and that when asked specifically about gluten-free food, 27% of the patients screened positive for food insecurity.
• Another study found that 1 in 6 celiac patients are food insecure.

Food insecurity can lead to poor dietary adherence and nutritional deficiencies in people with celiac disease. Limited access to gluten-free foods may force individuals to consume gluten, leading to adverse health effects and potential complications associated with celiac disease.

• Less than 1/4 of food insecure celiac patients adhere to a gluten-free diet, according to one study.
• At diagnosis, another study showed that patients with celiac disease had 1.70–2.75 times higher healthcare-associated costs than individuals without celiac disease.

The stress and anxiety associated with both managing a strict gluten-free diet and dealing with food insecurity can have significant psychosocial impacts. Research indicates higher levels of depression and anxiety in food-insecure individuals with celiac disease.

• One recent study presented at Digestive Disease Week 2024 showed that compared to food secure celiac patients, food insecure celiac patients reported reduced quality of life and increased anxiety and depression.

The economic burden of a gluten-free diet is well-documented. Families with celiac disease often spend more on groceries, which can be a significant strain for those already struggling financially. This economic pressure can exacerbate food insecurity.

• Gluten-free products are up to 183% more expensive than gluten-containing counterparts

The Hunger Vital Sign is a validated two-question screening tool used to identify individuals at risk of food insecurity. It involves asking the following questions: 

“Within the past 12 months, we worried whether our food would run out before we got money to buy more.” 

“Within the past 12 months, the food we bought just didn’t last, and we didn’t have money to get more.” 

• Positive Responses: Always True or Sometimes True
• Negative Response: Never True

It can also be useful to modify the Hunger Vital Sign to screen for Gluten-Free Food Insecurity. Research from Du, et al at Boston Children’s Hospital showed that 3-5% of families with celiac disease would be missed if no gluten-free qualifiers are added to the screening measure.  

“Within the past 12 months, we worried whether our gluten-free food would run out before we got money to buy more.” 

“Within the past 12 months, the gluten-free food we bought just didn’t last, and we didn’t have money to get more.” 

• Positive Responses: Always True or Sometimes True
• Negative Response: Never True

• USDA Household Food Security Survey Module (HFSSM): A more detailed questionnaire that can provide a comprehensive assessment of food security status. 

• Spanish Translation of the USDA Food Security Survey Module:  A Spanish translation of the U.S. Household Food Security Survey Module was developed by USDA researchers from previous translations by researchers at UCLA and the National Center for Health Statistics.