Exactly What Celiac Follow-up Appointments You Need (and When)

Consult this handy checklist to stay on top of your condition.

There’s a lot that goes into managing celiac disease—as I’ve learned over the past five years, it’s really not as simple as just going gluten-free and forgetting about it.

However, what I’ve realized in talking to many people in the celiac community is that there’s not an established standard for follow-up care. Some people I know see their gastroenterologists annually, while others have gone years without a celiac follow-up.

“To date, the major focus of CeD research has been on epidemiology and diagnosis, with little attention paid to establishing best practices for CeD follow-up and effective models of care,” notes a 2023 study published in the journal Nutrients.

The study authors add that “access to specialized expertise in CeD varies widely worldwide and even within countries.” At baseline, though, the researchers say everyone with celiac disease should have access to:

• A gastroenterologist for diagnosis and ongoing medical care

• A registered dietitian for supervised help managing the gluten-free lifestyle

• A social worker to help navigate the gluten-free diet at work, school, and in families

• A clinical psychologist for mental health support

“To date, the major focus of CeD research has been on epidemiology and diagnosis, with little attention paid to establishing best practices for CeD follow-up and effective models of care.” - 2023 study published in the journal Nutrients

Per the Mayo Clinic, following up with your medical team is key to managing celiac disease. They can monitor your progress through blood work (and endoscopy if symptoms persist or recur).

It usually takes three to six months for a child’s small intestine to heal after going gluten-free, according to the Mayo Clinic—but it can take a few years to fully heal as an adult, which is why staying on top of things is essential.

I recently visited my GI doctor after a two-and-a-half-year hiatus and came away with a list of follow-up testing to schedule, including an endoscopy, a bone density scan, and blood work to look at my celiac antibodies, vitamin and mineral profile, lipids, thyroid hormones, and blood glucose levels.

My gastroenterologist also suggested I meet with a dietitian again since I’ve been dealing with ongoing digestive problems despite following a pretty strict gluten-free diet for the past five years. On top of that, I’ve been seeing a therapist weekly since the beginning of the year to address my health anxiety.

Since I know this is all a lot to keep track of, I’ve outlined a general follow-up schedule for managing celiac disease ahead.

Disclaimer: The following information is intended for educational purposes only and isn’t medical advice. I’m not a medical professional, and everyone’s health needs are different. Consult your healthcare provider to determine the best course of action for you.

At the time of your celiac diagnosis

Upon being diagnosed with celiac disease, the Celiac Disease Foundation states your physician should do the following:

• Perform a complete physical exam, including checking for enlarged lymph nodes and blood in stool

• Order a bone density scan for adults and kids with severe malabsorption or bone health issues

• Order a celiac antibody blood test if you haven’t already done this before your diagnosis

• Order routine blood work (including complete blood cell count, iron, vitamin B, vitamin D, copper, zinc, thyroid stimulating hormones, and lipids)

• Recommend you meet with a dietitian to learn how to navigate the gluten-free lifestyle

• Recommend you meet with a mental health professional to learn how to cope with living with a chronic condition

• Check your immunization status for hepatitis B, flu, and pneumonia (fun fact: research shows celiacs have a high non-response rate to the hep B vaccine and may need to be revaccinated after going gluten-free)

Three to six months after your celiac diagnosis

It’s a good idea to schedule a follow-up three to six months after your diagnosis. The Celiac Disease Center at Columbia University Medical Center notes that this quick follow-up can help you identify and treat nutritional deficiencies and manage persistent symptoms. It also gives your doctor the opportunity to make sure you’re knowledgeable about the gluten-free lifestyle.

According to the Celiac Disease Foundation, during this first follow-up, your doctor should do the following:

• Assess your symptoms to ensure you’re adhering to a gluten-free diet

• Perform a complete physical exam if needed

• Order a celiac antibody blood test to monitor your progress

• Repeat routine blood work if anything was abnormal previously

One year after your celiac diagnosis

Your second follow-up should generally come 12 months after your diagnosis. According to the Celiac Disease Foundation, at this one-year follow-up, your physician should do the following:

• Assess your symptoms to ensure you’re adhering to a gluten-free diet

• Perform a complete physical exam if needed

• Order a celiac antibody blood test to monitor your progress

• Repeat routine blood work if anything was abnormal previously

• Assess your hepatitis B immunization status if it was abnormal previously

Annual celiac disease follow-ups

Once you’re in a good spot with managing your celiac disease, most experts typically recommend annual follow-ups from there on out. Per the Celiac Disease Foundation, at your yearly celiac check-in, your doctor should do the following:

• Assess your symptoms to ensure you’re adhering to a gluten-free diet

• Perform a complete physical exam if needed

• Order a celiac antibody blood test to monitor your progress

• Repeat routine blood work to check status of vitamin and mineral profile

• Recommend you get the flu shot

• Recommend you meet with a dietitian for continuing education about the gluten-free lifestyle if needed

• Recommend you meet with a mental health professional for help coping with living with a chronic condition if needed

• Order a bone density scan two to three years after your diagnosis if previous results were abnormal

• Recommend a repeat endoscopy and small intestinal biopsy three to five years after diagnosis to assess your gluten-free compliance and ensure your intestines are healing/have healed

What does your celiac follow-up care look like? Is there anything here that surprised you or that you’d like me to explore in-depth in a future newsletter? Drop a comment here and let me know!

Sources:

• Nutrients. 2023 Apr 24;15(9):2048. “Follow-Up of Celiac Disease in Adults: “When, What, Who, and Where.” https://pmc.ncbi.nlm.nih.gov/articles/PMC10181343/

• Mayo Clinic. Celiac Disease. https://www.mayoclinic.org/diseases-conditions/celiac-disease/diagnosis-treatment/drc-20352225

• Celiac Disease Foundation. Treatment & Follow-Up. https://celiac.org/about-celiac-disease/treatment-and-follow-up/

• Celiac Disease Center at Columbia University Medical Center. Follow-up. https://celiacdiseasecenter.columbia.edu/treatment/follow-up/