What to Know About Telehealth for Celiac Disease

Whether in the diagnostic process or to manage the condition long term, it is possible to receive telehealth services for celiac disease, an autoimmune disease in which gluten damages a person's small intestine. Telehealth is a way to receive healthcare services remotely through various communication technologies.

Telehealth has been around for over 50 years but has become increasingly popular for both patients and clinicians during the COVID-19 pandemic, when social distancing is mandated to prevent the spread of the novel coronavirus.

As with all conditions, there are some limitations to telehealth for celiac disease, and certain situations such as having an endoscopy performed or going to a lab for blood work will still require in-person healthcare visits. However, people with celiac disease will find that most routine follow-up appointments, discussions of test results, and nutritional counseling are available and appropriate for telehealth.

When to Use Telehealth for Celiac Disease

There are many ways in which telehealth is an option for people experiencing celiac disease. Some of these situations include when:

• You or your child has celiac disease symptoms, and you would like to discuss the diagnostic process with your healthcare provider.
• You wish to consult with your healthcare provider about when to start a gluten-free diet before a celiac disease diagnosis.
• A close relative has been diagnosed with celiac disease, and you would like to confirm whether you should be tested, too.
• You need information from your gastroenterologist about the meaning of your blood test or biopsy results.
• You require nutritional counseling to learn about maintaining a gluten-free diet after being diagnosed with celiac disease.
• You have follow-up questions for your gastroenterologist after being diagnosed with celiac disease.
• You would like to discuss options with your healthcare provider after following a gluten-free diet but are still having symptoms.
• You need to speak with a therapist because your mental health has been impacted by the lifestyle changes celiac disease requires.

Benefits and Challenges

There are many benefits to telehealth for celiac disease management. Reasons that someone with celiac disease might find telehealth more appealing than in-person care include the following items.

Cost-Effectiveness

Telehealth may be particularly beneficial for people with celiac disease because it is more cost-effective than in-person health care.

Celiac disease is a chronic condition that requires a lifelong gluten-free diet. People with celiac disease must take on a persistent economic burden due to frequent medical appointments, associated comorbidities (other diseases they may have), and the high cost of purchasing gluten-free food.

A 2019 study found that gluten-free products are approximately 183% more expensive than their gluten-containing counterparts, creating a financial burden and a barrier to gluten-free diet compliance for many people with celiac disease.

Telehealth may lighten that financial load since multiple studies into a variety of chronic health conditions have found telehealth to be cost-effective due to factors such as reduced travel expenses, reduced time off work, reduced childcare expenses, increased quality of life.

One 2020 pilot study found that telehealth via remote group video sessions was as effective as in-person care in teaching families about the gluten-free diet, with the added benefit of reducing travel costs for participants.

Accessibility

Telehealth is also often more convenient and accessible than in-person care. This is particularly true for people who live in rural geographic areas, who would otherwise have to take time off work or travel long distances for in-person care.

For people with celiac disease, the accessibility of telehealth also means increased access to celiac disease specialists, who may be few and far between in certain areas of the country.

This dearth of celiac disease specialists and dietitians, and the subsequent benefit of telehealth, was noted by the Celiac Disease Foundation (CDF) in April 2020. The CDF stated that "because of telehealth, we may see significant improvement in the management of celiac disease in the post-COVID-19 future."

COVID-19 Pandemic

The COVID-19 pandemic has accelerated advancements in telehealth due to the necessity to social distance and reduce the spread of the virus. A 2020 systematic review found that telehealth is the most beneficial form of health care for reducing transmission of the virus, morbidity, and mortality.

In a survey of celiac disease patients in Italy during the COVID-19 pandemic, patients reported satisfaction with telehealth services, including explicitly asking for telehealth instead of in-person healthcare.

Challenges

Unfortunately, there also are challenges to telehealth for celiac disease, particularly in the time of the COVID-19 pandemic. One dietitian specializing in celiac disease noted in the May 2020 edition of Gastroenterology, Hepatology & Digestive Disorders that "our underserved patients remain underserved due to the limited availability of technology."

Lack of equitable access to telehealth technology, such as Wi-Fi, computers, or smartphones, has contributed to ongoing health disparities among populations with chronic conditions like celiac disease.

People who are not used to using digital devices may be particularly at a disadvantage for seeking telehealth care due to a lack of technological literacy. Additionally, one study found that older adults were more hesitant to use telehealth than younger populations due to an increased concern over privacy.

There are also limitations to telehealth in terms of which types of services are appropriate for remote care and which are not. Celiac disease diagnosis can require blood tests, an endoscopy, or a biopsy, and these almost always require an in-person visit.

That said, there is emerging research on ways to use telehealth to perform some procedures, including endoscopies, which traditionally require inserting a fiber-optic tubular instrument into the body. Performing a remote endoscopy by using a panoramic-view endoscopic capsule may be an option that eliminates the need to travel and to have an invasive procedure, and it limits possible coronavirus exposure.

This capsule is mailed to patients, who ingest it and expel it via their stool before sending it back to their gastroenterologist. This emerging technology is not widely available yet, however, and, for the time being, most patients will find that having an endoscopy for a celiac disease diagnosis will require an in-person visit.

How to Prepare for a Telehealth Visit for Celiac Disease

If you have an upcoming telehealth appointment for celiac disease or are considering setting up a telehealth appointment, it's important to be prepared. Some ways to prepare for a telehealth visit include to:

• Check with your current healthcare providers on their telehealth offerings and services. Each provider is unique, and many have their own designated patient portal applications.
• Determine whether your telehealth appointment will be over video or audio.
• Determine whether your telehealth appointment will be synchronous (you and your provider are both online and interacting) or asynchronous (you exchange information but are not interacting in real time). Some healthcare providers may offer remote nutritional counseling via prerecorded videos.
• Create a list of follow-up questions for your gastroenterologist or dietitian.
• If you are experiencing symptoms and seeking a diagnosis, journal your symptoms and diet for a few weeks. Having this information on hand might help your healthcare provider draw links between gluten in your diet and symptoms.
• If you are already on a gluten-free diet but are still experiencing symptoms, journaling your diet and symptoms might help your healthcare provider or dietitian identify areas of possible cross-contact with foods containing gluten.
• Find an area in your living space that has a stable Internet connection and is quiet and well lit.
• Consider contacting your healthcare provider, dietitian, or nutritionist from your kitchen, so you can show them the area where you prepare food and can easily refer to products and their ingredients. This could be particularly useful if your kitchen is a shared space and you are concerned about cross-contact with food containing gluten.
• Check with your insurance carrier about telehealth benefits.
• Download the telehealth application ahead of time and make sure you know your username and password.
• If you live in a shared space and want to maintain your privacy, find a private area and consider using a fan or noise machine to make the experience feel more private.
• If you don't have access to a stable Internet connection or the necessary technology, discuss your concerns with your healthcare provider beforehand. Some providers may be able to supply tablets or other digital devices to their patients.

What Happens During the Visit?

What happens during your telehealth visit for celiac disease will depend on a few factors, including the type of clinician you see (primary care healthcare provider, gastroenterologist, psychotherapist, or registered dietitian) and the reason for the visit (such as discussing endoscopy results, nutritional counseling, or follow-up care).

If you are seeing a healthcare provider about a celiac disease diagnosis, you typically will have an informal interview. Be prepared to answer questions such as:

• What symptoms you are experiencing
• When your symptoms began
• What your typical diet is like
• Whether you are currently eating a gluten-free diet
• If you have any close relatives who have been diagnosed with celiac disease
• Anything you do that seems to help your symptoms

A healthcare provider who suspects celiac disease will typically order blood tests or refer you to a gastroenterologist for an endoscopy. These tests will likely require in-person appointments, with the option to have a telehealth appointment to discuss your results.

Alternatively, you may be given a telehealth appointment for nutritional counseling so your dietitian can educate you on the gluten-free diet and how to avoid pitfalls, such as cross-contact with food made with gluten or vitamin deficiencies in your diet.

You may be given a meal plan, a shopping list, and an introduction to common terms for gluten found in ingredient labels. Follow-up appointments may discuss your concerns and questions, so be sure to keep tabs on your symptoms and how well you are tolerating the gluten-free diet.

A Word From Verywell

Celiac disease is a chronic condition that is only manageable by a 100% gluten-free diet. It can be overwhelming to be newly diagnosed with celiac disease and begin navigating the complicated world of eating gluten-free foods.

Even those who have been diagnosed for years may struggle at times to maintain a gluten-free diet or manage their vitamin deficiencies. Because of the challenges of celiac disease, it's important to have access to health care, whether that's with a gastroenterologist, a primary care healthcare provider, a dietitian, or a mental health counselor.

Telehealth is an important bridge, particularly during the COVID-19 pandemic, that will help you get the care you need conveniently and cost-effectively.