What is the recommended surveillance and management plan for individuals with celiac disease?

Celiac Disease Surveillance and Management

The recommended surveillance and management plan for individuals with celiac disease requires strict lifelong adherence to a gluten-free diet (GFD), regular follow-up with a healthcare team including physician and dietitian, and periodic serological testing to monitor adherence. 1, 2

Initial Management After Diagnosis

• Refer newly diagnosed patients to a dietitian experienced in celiac disease for nutritional assessment and counseling about implementing a gluten-free diet 1
• Test for micronutrient deficiencies including iron, folate, vitamin D, and vitamin B12 1, 2
• Determine bone mineral density to assess for osteoporosis 1
• Treat identified nutritional deficiency states promptly 1

Gluten-Free Diet Implementation

• Strictly avoid all products containing wheat, barley, and rye proteins for life 1
• Pure oats may be introduced slowly with monitoring for adverse reactions, as they are safe for most patients with celiac disease 1
• Incorporate alternative gluten-free grains such as buckwheat, amaranth, quinoa, millet, and sorghum to improve nutritional profile 1
• Focus on home-made, natural gluten-free preparations including extra-virgin olive oil, milk, yogurt, plant foods, and fish rich in omega-3 fatty acids 1

Regular Monitoring and Follow-up

• Schedule regular follow-up visits with a healthcare team including physician and dietitian 1, 3
• Use a combination of history and serological testing (IgA-TG2) to monitor adherence to gluten-free diet 3
• Verify normalization of clinical abnormalities detected on initial laboratory investigations 3
• Be aware that in adults, small intestinal mucosa heals more slowly and less completely than in children, so negative serologic test results do not necessarily mean complete mucosal healing 3

Management of Nonresponsive Celiac Disease

• Review dietary history for inadvertent gluten ingestion, which is the most common cause of persistent symptoms 3, 1
• Check serologic testing to assess for ongoing gluten exposure 1
• Consider other conditions if gluten exposure is not the cause:
  • Microscopic colitis 3, 1
  • Pancreatic exocrine insufficiency 3, 1
  • Small intestinal bacterial overgrowth 3, 1
  • Disaccharidase deficiency 3, 1
• Consider intestinal lymphoma, small bowel strictures, or refractory sprue in persistently febrile or very ill patients 3

Benefits of Strict Gluten-Free Diet Adherence

• Protects against development of non-Hodgkin's lymphoma in celiac disease and dermatitis herpetiformis 3, 1
• Improves nutritional parameters and corrects deficiencies 3, 1
• Increases bone mineral density, with greatest improvements in first years of treatment 3, 1
• May help achieve ideal body weight, whether underweight or obese at diagnosis 3

Screening High-Risk Groups

• First-degree relatives of patients with celiac disease 2
• Patients with type 1 diabetes mellitus, autoimmune thyroid disease, Down syndrome 2
• Individuals with unexplained iron deficiency anemia, unexplained liver transaminase elevations, and premature osteoporosis 2

Common Pitfalls to Avoid

• Initiating a gluten-free diet before diagnostic testing can lead to false-negative results 2
• Inadequate number of biopsy specimens can miss patchy mucosal lesions 2
• Failing to test for IgA deficiency can lead to false-negative serologic results 2
• Overlooking extraintestinal manifestations can delay diagnosis 2
• Assuming that all symptoms will resolve immediately after starting a gluten-free diet; some nutritional deficiencies may take time to correct 2

Long-term Surveillance Recommendations

• Annual follow-up visits with healthcare provider to assess symptoms and adherence 3, 1
• Annual serological testing with IgA-TG2 to monitor for major dietary indiscretions 3
• Periodic assessment of nutritional status and bone health 1
• Consider repeat endoscopy with biopsy in select cases with persistent symptoms despite adherence to GFD 2