A Clinical Update

Nonceliac Gluten Sensitivity—Is it Really the Gluten?

Bernadette Capili, PhD, NP-C; Michelle Chang, MS; Joyce K. Anastasi, PhD, DrNP


Journal for Nurse Practitioners. 2014;10(9):666-673. 

In This Article

Clinical Management

The lifestyle transition to a gluten-free or any restricted diet is often overlooked and can be confusing.[43] For most patients, upon initial diagnosis, they are given a list of foods to remember to avoid or limit and are left to manage this condition largely on their own. Extensive education and referral to a registered dietitian with expertise in social and emotional adaptation to living with food intolerances are vital. Some patients may consume processed or prepared gluten-free products, which can be loaded with excessive calories, fat, salt, and sugar, and may contribute to additional risk factors such high cholesterol and high blood pressure. Many fortified breads and cereals in the US are sources of B vitamins and dietary fiber. When patients omit gluten from their diet without proper substitutions, there exists the possibility of nutritional deficiencies.

Gluten and wheat are often interchanged and confused. A food labeled "wheat-free" may be safe for someone with wheat allergy but not necessarily for someone with NCGS or CD. For example, a person with a wheat allergy may tolerate bread labeled "wheat-free," but it may contain other grains, such as barley, rye, or malt, which a person with NCGS or CD may not tolerate. Identification and labeling of gluten-free foods is a significant issue in adhering to a GFD, particularly in those with CD. In 2013, the US Food and Drug Administration issued a federal ruling that standardized the definition of "gluten-free" claims across the food industry for voluntary labeling. The ruling requires that, to use the term "gluten-free" on its label, the food contains none of the following:

  1. An ingredient that is any type of wheat, rye, barley, or crossbreeds of these grains.

  2. An ingredient derived from these grains and that has not been processed to remove gluten.

  3. An ingredient derived from these grains and that has been processed to remove gluten, if it results in the food containing 20 or more parts per million gluten.[44]

The deadline for compliance is August 2014. Because food manufacturers may frequently change product ingredients, it is always important to double check product labels each time a food is purchased, as the gluten-free status of a particular product may change at any time. The NP should also carefully review any of the patient's prescription and over-the-counter medications for gluten and/or wheat content.

For most individuals, in addition to the increased time and effort required to read and understand packages and product labels, difficulty arises with the increased costs. A 2007 study determined that, overall, gluten-free products are far more expensive than comparable regular gluten-containing products, by a rate of 2- to 3-fold. In addition, the availability of gluten-free products was shown to vary between stores and regions.[45]

Because the role of gluten is still unclear for patients with NCGS, it is necessary to differentiate the triggers of their symptoms. A food/symptom diary can help highlight triggers for both patient and provider, as well as monitor compliance of dietary advice. For example, a patient may keep a diary while following a low FODMAP diet for 6 weeks, and then high FODMAP foods may be gradually reintroduced one at a time in small amounts to identify foods that could be triggers to symptoms of gas or bloating. NPs need to be aware that what benefits the patient may be a process of trial and error through gluten withdrawal, wheat exclusion, or a low FODMAP diet.

In guiding patients, it is important to emphasize that it is not only about avoiding gluten, wheat, and/or high FODMAPs, but maintaining optimal nutritional intake and dietary habits over the long term. The patient's weight needs to be carefully assessed at the time of diagnosis and initiation of a diet/lifestyle change and monitored for normalization of weight if under- or overweight. A gluten-free, wheat-free, or low FODMAP diet can be a well-balanced one if care is taken with food choices. Emphasize the variety of foods allowed and substitutions that will make the diet and/or lifestyle seem less restrictive, while highlighting the abundance of naturally gluten-free/wheat-free foods such as fruits and vegetables. Discuss the importance of nutritional issues (iron, vitamin B deficiencies, and fiber) and cross contamination. Demonstrate clear reading of labels, shopping points, and reliable sources of product information on the web and support groups. Encourage the pleasure of dining out with friends and family with easy restaurant and travel planning tips. Education can be tailored by providing appropriate meal-planning guidelines, with simple, cost-sensitive recipes to rely less on processed foods.

Living with any chronic condition requires demands and discipline on the individual due to the need to learn self-management. Among patients with CD, up to 60% are partially nonadherent to a GFD.[46] In 1 study, 51% of participants reported a minimal level of stress and 25% reported a moderate level of stress with regard to adherence to a GFD.[47] NCGS patients may require psychosocial support because the symptoms can be vague and the research is still limited. Thus, follow-up is paramount, as it remains unclear as to the duration of maintaining a GFD and tolerance amounts with NCGS. Patients with NCGS may be able to test their exposure to gluten as needed to avoid symptoms.[48] NPs can play a pivotal role by encouraging patients to return for regular follow-up in person, over the phone, or by setting up structured surveys.

Patients are increasingly discussing their "gluten sensitivity" and, with the recent interest in gluten-free diets, the topic of gluten-related disorders is often poorly understood. The diverse clinical presentation of NCGS with symptoms similar to other conditions adds to the confusion, so NPs need to be knowledgeable about how to diagnose and manage these patients. As the literature on NCGS is still evolving, NPs need to stay up to date on this clinical entity and best guide their patients as the standards of care based on scientific evidence become firmly established.