Celiac Disease: Ten Things That Every Gastroenterologist Should Know

Amy S. Oxentenko; Joseph A. Murray


Clin Gastroenterol Hepatol. 2015;13(8):1396-1404. 

In This Article

8. How Are Adherence and Response to a Gluten-free Diet Measured?

Adherence to a GFD can be measured by self-report, dietitian inquiry, structured surveys, serologic titers, and assessment of mucosal healing. Most patients with CD will claim to be gluten-free; however, true adherence ranges from 42% to 91%.[57] Multiple factors affect compliance, including the ability to follow the GFD in relation to changes (travel, dining out, social events, stress, mood), being involved in CD support groups, and comprehension of the GFD. Although self-reporting may be useful early in GFD, its reliability declines over time.

All CD patients should have a follow-up consultation with a dietitian well-versed in the GFD if adherence is questionable or additional resources are needed. Brief adherence surveys have been developed that are as good, if not better, than following serologic titers. The Celiac Dietary Adherence Test is a 7-item validated questionnaire that correlates with results of a structured dietitian assessment and serologic concentrations.[58] Similarly, a 1-minute, 4-question survey with a 5-level scoring system correlates well with serologic positivity, villous atrophy, and celiac-related complications, with lower scores predicting adverse outcomes.[59]

Once on a GFD, there is improvement of clinical, serologic, and histologic features, albeit at differing rates. In adults, diarrhea improves within days, with mean time to symptom improvement of 4 weeks, and two-thirds of patients have complete resolution by 6 months. Abdominal pain, fecal incontinence, and bloating all improve similarly.[60] Failure of symptoms to improve should prompt evaluation for associated disorders or celiac-related complications.[61]

Serologic titers fall soon after initiating a GFD, with substantially lower antibody levels at 1 year with ongoing decline to negative/normal by 2 years. Although antibody levels will decline in incompletely compliant patients, the rate of decline will be less than with strict compliance.[62] Normal serology does not guarantee strict GFD adherence; in addition, many patients have ongoing mucosal atrophy despite normal serology.[63]

Histologic improvement is slow in adults and delayed compared with symptomatic or serologic improvement.[64] Mucosal recovery, defined by a villous:crypt ratio of 3:1, was present in 34% at 2 years and in 66% at 5 years,[63] with healing complete in 90% by 9 years. Persistent injury is more likely in those who are noncompliant or who had severe symptoms or total villous atrophy at baseline.[63] Therefore, repeat biopsies after 1 year on a GFD may still show mucosal injury, and providers could consider waiting 2 years before assessing healing. Mucosal recovery is faster and more complete in children, with 95% recovery in 2 years and 100% recovery long-term in children following a GFD.

Physicians should provide consistency in the follow-up care of patients with CD.[3] Currently, there is significant variability in the care provided,[65] with suboptimal follow-up of CD at 1 and 5 years of 41.0% and 88.7%, respectively.[66]

Practical Suggestion

A follow-up visit should be scheduled 3–6 months after CD is diagnosed, with serologic titer considered then, and annual visits and serology thereafter. Assess for adherence to a GFD with structured interview with an expert dietitian. Patients can be assessed for histologic improvement after 2 years on a GFD.