Living With Celiac Disease

If you find yourself living with celiac disease, it means that your body has an autoimmune reaction to gluten, a type of protein found predominantly in wheat. Individuals with this autoimmune disease are at risk of damage to the small intestine, as well as complications such as multiple sclerosis, type 1 diabetes, miscarriage and epilepsy.¹ So, how do you manage celiac disease?

A person with celiac disease must avoid ingesting even trace amounts of gluten, which can make it tricky to adjust to living with celiac disease. Along with your doctor’s advice, you can learn how to manage celiac disease below.

Getting a diagnosis for celiac disease may prove challenging for some. Doctors must first rule out other common diagnoses with similar symptoms. It can be helpful to keep a food and symptoms journal. Write down everything you eat, as well as all symptoms you experience and when they arise. Bringing this information to your medical appointments may be helpful in determining whether you should be tested for celiac disease.

Managing celiac disease involves an adjustment to your eating habits. Those with celiac disease often need to transition to a gluten-free diet. There are now many options for those who need to eat gluten-free. Be aware and communicate your dietary needs to receive the necessary accommodations.

When options are difficult to access, you may want to bring your own prepared meal. If using a shared grill, wrap your food in heavy-duty aluminum foil.

Before going out to a restaurant, research your options well in advance, especially if planning a trip out of town. Research the restaurant’s website to see if they can accommodate your dietary needs. Specifically, you might learn how the restaurant avoids cross-contamination, such as whether there is a dedicated gluten-free prep space.

If you are interested in a second or third opinion to verify your diagnosis, it's a good idea to write down any questions you have and bring the list with you to your appointments. Try to work with your healthcare providers as a collaborative team member. If you have different providers across various health systems, you may need to request your medical records and bring them to your different appointments.

There are a multitude of studies, clinical trials and tools being explored to help make living with celiac disease easier, such as the Nima device. The Nima sensor tests a pea-sized amount of food for traces of gluten. Do note, however, that it’s not 100% foolproof.²

In addition, the FDA has agreed to fast-track a vaccine that is intended to protect against accidental gluten exposure. The goal is to eventually develop this particular vaccine to allow persons with celiac disease to have a normal, unrestricted diet.³

Lastly, several different drugs are in various stages of development that could potentially help people with celiac disease. Some drugs are intended to use enzymes to break down gluten, while others are designed to prevent or interrupt the immune reaction.⁴ At times living with celiac disease can be challenging, but with new developments and a little effort, it is not impossible to live a normal, healthy life.

If you’re fascinated by health science, you might consider pursuing a related career. The College of Nursing and Health Care Professions can help students prepare for careers in the healthcare field they may find rewarding. Learn more by completing the form on this page. 

¹ Celiac Disease Foundation. (n.d.). What is celiac disease. Celiac Disease Foundation. Retrieved July 13, 2023. 

² Beyond Celiac. (2016, November 21). The Nima sensor: a portable gluten testing device. Beyond Celiac. Retrieved July 13, 2023. 

³ Celiac Disease Foundation. (2019, January 1). Nexvax2 therapeutic vaccine fast-tracked by FDA. Celiac Disease Foundation. Retrieved July 13, 2023. 

⁴ Beyond Celiac. (2023, May 25). Drug development pipeline. Beyond Celiac. Retrieved July 13, 2023.