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Celiac Disease in Older Adults: Incidence and Management

Woman looking at gluten-free recipes on phone
Julia started a new job as the registered dietitian nutritionist (RDN) at a continuing care retirement community. She noticed that the community’s assisted living and skilled nursing units had a number of physician orders for gluten-free diets. Julia decided she should evaluate each of these orders to determine if they are based on a diagnosis of celiac disease, and then follow up with each resident to address issues or concerns with their gluten-free diets.

Celiac Disease in Older Adults

Celiac disease (CD) in older adults is not well-understood or well-recognized1 and is often misdiagnosed as irritable bowel syndrome4. Symptoms can be subtle2 and digestive symptoms may be milder than in younger persons. It may be mistaken for an aging GI system, medications, or other medical conditions. Signs of micronutrient deficiencies may be the first and often the only manifestation of CD in the elderly3.

Surprisingly, up to 25% of cases are diagnosed in adults over 60 years of age, even though many have had CD for most of their lives1,4. Although data is sparse, incidence of celiac disease in those over 65 years of age has been reported to have increased over time from 4% to 19-34%5. Physician’s orders for gluten-free diets in Julia’s community may have been based on either a long-standing or a recent diagnosis of celiac disease.

Management of Celiac Disease in Older Adults

Treatment of CD in older adults is the same as children and younger adults – a strict gluten-free diet for life. Recovery of intestinal villi may occur more slowly in older adults than in younger patients1. As with younger adults, symptoms should improve gradually over time.

Older adults bring a unique set of challenges to the management of CD. Although research indicates that older adults are often motivated to adhere to a gluten-free diet1, lifelong habits can be difficult to change, and older adults may not be motivated to make changes if symptoms don’t improve. Challenges with adhering to a gluten-free diet may be exacerbated by vision problems, difficulty reading food labels, barriers related to food shopping and preparation, memory issues or financial constraints.

In health care and post-acute care settings, a diagnosis of CD should result in a diet order for a gluten-free diet. Julia should counsel residents diagnosed with CD on the risks and benefits of the gluten-free diet for treatment, but the ultimate decision of whether to follow the diet is up to the individual. Some residents may choose to eat what they want despite a CD diagnosis. Julia should serve as a resource and provide support on issues related to managing their celiac disease.

Gluten Free Diets in the Absence of Celiac Disease

Gluten-free diets may also be useful for those with non-celiac gluten sensitivity (a gluten intolerance in the absence of celiac disease), but it is not known if gluten must be strictly avoided for life to manage sensitivity6. Some of Julia’s residents probably have non-celiac gluten sensitivity, and they may have been told to avoid gluten. Some of them may have discovered through trial and error that avoiding or limiting gluten minimized their symptoms. For these individuals, a gluten-free diet may be useful, but it is unclear if strict avoidance of gluten is needed. Because limiting or avoiding gluten may help with symptom management, their food preferences should be taken seriously.

Several of Julia’s residents have gluten-free diet orders based on the individual’s or family’s preference, rather than a diagnosis of CD or non-celiac gluten sensitivity. “Going gluten-free” has become trendy for healthy adults and older adults, despite the expense and complications of adhering to the diet. Gluten-free living is not necessary for optimum health, weight loss, increased energy or other health claims unrelated to celiac disease6. Even though Julia advises that a restrictive diet is not necessary, some residents and/or families disagree and want the gluten-free diet to remain in place. While the facility should honor these preferences to the degree possible, Julia should document in the medical record that the diet is based on preferences as opposed to a CD diagnosis. Julia should also discuss the risks of following the diet, which can include unnecessary avoidance of favorite foods and potential nutrient deficiencies.

Obtaining Gluten-Free Foods

Food service operations may not always be able to purchase specific brands and types of gluten-free food from their suppliers. Julia needs to inform her residents/families of this issue, and let them know that they can bring gluten free foods into the facility as long as they follow the facility policies based on local, state and federal regulations for using food from outside sources.

Gluten free diets can be challenging for post-acute care providers. The first step is to determine the need to follow a gluten free diet based on diagnosis versus the preference to follow the diet as a personal choice. Realizing that a meaningful percentage of older adults may have a diagnosis of CD or non-celiac gluten sensitivity is important. These older adults need to be offered appropriate foods and encouraged to follow the gluten free diet, realizing that the ultimate choice is still the individual’s choice. As the RDN, Julia can provide support and resources and counsel resident’s according to their needs and preferences.

Additional Resources

Becky Dorner & Associates provides additional information and continuing professional education credits on gluten-free diets including our recorded webinar and CPE course.

Becky Dorner & Associates, Inc. is a trusted source of valuable continuing education, nutrition resources and creative solutions. Visit our website to sign up for free news and information.

References

  1. Collin P, Vilppula A, Luostarinen L et al. Review article; Celiac disease later in life must not be missed. Aliment Pharmacol Ther. 2018;1-10. doi:10.1111/apt.14490.
  2. Johnson MW, Ellis J, Assante MA, Ciclitira PJ. Celiac disease in the elderly. Nature Clinical Practice Gastroenterology & Hepatology. 2008; 5:697-706.
  3. Rashtak S, Murray JA. Celiac disease in the elderly. Gastroenterol Clin North Am. 2009;38(3):433-446. doi.10.1016/j.gtc.2009.06.005.
  4. Ravindran NC, Moskovitz DN, Young-In K. The Aging Gut. In: Chernoff R, ed. Geriatric Nutrition. 4th ed. Burlington M: Jones and Bartlett Learning. 2014:250-251.
  5. Capello M, Morreale GC, Licata A. Elderly onset celiac disease: a narrative review. Clinical Medicine Insights: Gastroentology. 2016;9:41-49. doi.10.4137/CGast.S38454.
  6. Case, S. Gluten Free: The Definitive Resource Guide. Regina Saskatchewan Canada: Case Nutrition Consulting, Inc. 2016.

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