Beyond the Diagnosis: Expert Insights on Celiac Disease Follow-Up Care

Dr. Runa Watkins -Pediatric Gastroenterologist at the University of Maryland School of Medicine

Getting diagnosed with celiac disease is just the beginning of the journey—what comes next is just as important. I recently interviewed Dr. Runa Watkins, a pediatric gastroenterologist at the University of Maryland School of Medicine, to discuss what happens after diagnosis. How often should you follow up with your doctor? What tests are important? In this interview, Dr. Runa Watkins breaks it all down in a way that's easy to understand. If you’ve ever wondered whether you’re doing enough to stay gluten-free and healthy with celiac disease, this one’s for you!

General Follow-Up Care

How important is follow-up care for those diagnosed with celiac disease?

"Follow-up care after a diagnosis of Celiac Disease is very important and should be done on a yearly basis."

What does follow-up care for celiac disease typically involve?

"It involves seeing your Celiac specialist on a yearly basis and having labs drawn to monitor your celiac serologies and vitamin levels. This visit should also involve a dietitian with expertise in Celiac Disease to have any dietary questions answered."

How soon after diagnosis should a patient schedule their first follow-up appointment?

"After diagnosis, we recommend a follow-up appointment in 3 months to discuss dietary issues, as there is a steep learning curve when implementing a gluten-free diet. We do follow-up serologies every 6 months, as we are expecting serologies to normalize in the first 1-2 years after adhering to a gluten-free diet."

What symptoms should patients watch for that might indicate ongoing issues?

"We follow specific symptoms, and if these symptoms are secondary to gluten, they should be resolved within 1-2 years of a gluten-free diet. If there is strict dietary adherence and serologies have normalized, but symptoms persist, further workup for other diagnoses should be considered."

Testing & Monitoring

Is there blood work that should be done? If so, what blood work is needed?

"Blood work should consist of celiac serologies and vitamin levels."

If blood work is needed, what can the doctor learn from the results of the tests?

"The serologies let us know if one has been exposed to gluten in the diet, as they will be elevated. If they normalize or remain normal, we know one is adhering to a strict gluten-free diet. The vitamin levels tell us if there are any specific deficiencies, for which we can supplement."

When is an endoscopy recommended for follow-up?

"An endoscopy for follow-up is recommended after 1-2 years of diagnosis to determine if inflammation in the small intestine has completely healed on a strict gluten-free diet."

Are there any additional tests for patients who continue to experience symptoms despite following a gluten-free diet?

"This is symptom and patient-dependent, as the physician would need to determine which type of evaluation would be warranted."

Healing & Long-Term Management

How long does it typically take for the gut to heal after going gluten-free?

"Studies show that healing in pediatrics takes 1 year with a gluten-free diet to have complete healing of the small intestine. In adults, it can take up to 2 years."

What lifestyle changes, beyond diet, can help support gut healing?

"A gluten-free diet is the only way to achieve complete healing of the small intestine with a diagnosis of Celiac Disease. A healthy lifestyle to promote gut health includes probiotics, staying hydrated, regular exercise, managing stress, limiting processed foods, and avoiding excessive alcohol consumption."

Insurance & Financial Considerations

Does insurance typically cover follow-up visits and testing for celiac disease?

"Yes."

Are dietitian visits covered, and how important is working with a dietitian for long-term management?

"Because a gluten-free diet is the only treatment for Celiac Disease, meeting with a dietitian at your follow-up visits is extremely important. Dietitian visits should be encompassed during the follow-up visits with your Celiac specialist and, in turn, will be covered."

Taking care of yourself doesn't stop once you are diagnosed. It’s an ongoing process of learning, adapting, and staying on top of your well-being. Dr. Runa Watkins has given us valuable insight into the importance of follow-up care and how small adjustments can make a big difference in managing symptoms and overall health. If there’s one takeaway from this conversation, it’s that regular follow-up care and being proactive about your health can help you feel your best. Thank you for joining us in this discussion—stay informed, advocate for yourself, and don’t hesitate to seek the care you deserve!