Management of Celiac Disease
The cornerstone of celiac disease management is a strict, lifelong gluten-free diet with intake of less than 10 mg gluten per day, combined with immediate referral to an expert dietitian and comprehensive nutritional assessment. 1, 2
Initial Management Steps
Immediate Referrals and Assessments
Refer all newly diagnosed patients immediately to a dietitian experienced in celiac disease management for nutritional assessment and counseling about implementing a gluten-free diet. 2, 3 This is not optional—dietary counseling by a nutrition specialist is the key to successful long-term management. 4
Test for micronutrient deficiencies at diagnosis, specifically iron, folate, vitamin D, and vitamin B12, as these are common in celiac disease. 2, 3
Determine bone mineral density to assess for osteoporosis, as celiac disease significantly impacts bone health. 2
Treat any identified nutritional deficiency states promptly. 2
Goals of Treatment
The treatment aims to relieve symptoms, achieve mucosal healing, avoid complications (especially lymphoma), and maintain good quality of life with a nutritionally complete gluten-free diet. 1 This requires patient motivation, expert information delivered collaboratively, and resources including expert dietitians and interested medical care. 1
Gluten-Free Diet Implementation
Core Dietary Restrictions
Strictly avoid all products containing wheat, barley, and rye proteins for life. 2, 3 This includes both gluten as a direct ingredient and as a hidden component, plus potential cross-contamination in foods. 5
Pure oats may be introduced in most patients, but should be added slowly with careful monitoring for adverse reactions. 2, 3 Some patients do not tolerate oats despite their theoretical safety. 1
Nutritional Optimization
Incorporate alternative gluten-free grains such as buckwheat, amaranth, quinoa, millet, and sorghum to improve the nutritional profile. 2, 6 Most commercial gluten-free products rely heavily on rice alone, which is nutritionally inadequate. 5
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. 2 This approach is superior to relying solely on processed gluten-free products.
Monitor for weight gain and obesity, as overweight/obesity frequency has increased among celiac patients following gluten-free diets. 5 The diet must be not only gluten-free but also balanced to avoid nutrient deficiencies or excess. 5
Follow-Up and Monitoring
Regular Surveillance
Schedule regular follow-up visits every 6-12 months with the healthcare team including physician and dietitian. 2, 3, 6 This ensures response to treatment, prevention of consequences, and continued motivation to remain gluten-free. 1
Use a combination of history and serology to monitor adherence to the gluten-free diet. 2, 3 Anti-TG2 IgA serum levels are useful for routine serological assessment of dietary adherence. 6
Verify normalization of clinical abnormalities detected on initial laboratory investigations. 2
Consider standardized patient-reported adherence questionnaires when an expert dietitian is not available. 2
Role of Follow-Up Biopsy
There is no consensus on universal follow-up biopsy. 1 Some experts perform follow-up biopsies in all patients after 2-5 years on a gluten-free diet, while others reserve biopsies for those with persistent/recurrent symptoms or continued diagnostic uncertainty. 1 However, persistent villous atrophy is associated with statistically significant increased risk of lymphoma compared to those with mucosal healing. 1
Management of Non-Responsive Celiac Disease
Non-responsive celiac disease affects 4-30% of patients who report persisting symptoms after adopting a gluten-free diet. 1 This requires a systematic approach:
Step 1: Confirm Original Diagnosis
- Review the original biopsy, serology, and HLA status to ensure the diagnosis of celiac disease was correct. 1, 2
Step 2: Assess Dietary Adherence
Review dietary history with an expert dietitian for inadvertent or deliberate gluten exposure, as this is the most frequent cause of non-responsive celiac disease. 1, 2
Check serologic testing to assess ongoing gluten exposure. 2
Step 3: Evaluate for Alternative Diagnoses
If adherent to the diet, consider other conditions including: 1, 2
- Microscopic colitis
- Pancreatic exocrine insufficiency
- Small intestine bacterial overgrowth (SIBO)
- Disaccharidase deficiency (lactose intolerance)
- Giardia or other pathogens
- Hyperthyroidism
- Fructose intolerance or FODMAP sensitivity
Step 4: Perform Follow-Up Biopsy
A follow-up biopsy is needed in patients with non-responsive celiac disease to assess for ongoing enteropathy. 1
Small bowel imaging should be performed in any patient with abdominal pain, persisting fever, obstruction, anemia, gastrointestinal bleeding, or unexplained weight loss. 1
Differentiate between refractory celiac disease type I and type II by demonstrating monoclonal T-cell populations or aberrant T cells in type II. 1
Expected Benefits of Gluten-Free Diet
Protection Against Complications
A gluten-free diet decreases the excess risk of non-Hodgkin's lymphoma in patients with celiac disease. 1, 2 Most studies point toward a protective effect from the gluten-free diet, with the strongest evidence showing increased lymphoma risk in those with persistent villous atrophy. 1
A gluten-free diet decreases the excess risk of adverse fetal outcomes in pregnant women with celiac disease. 1
Nutritional and Bone Health
A gluten-free diet improves nutritional parameters in patients with celiac disease. 2
A gluten-free diet increases bone mineral density, with the greatest improvements occurring in the first years of treatment. 2
Critical Pitfalls to Avoid
Never start a gluten-free diet before completing celiac disease testing, as serologic and histologic features normalize after diet initiation, making diagnosis impossible. 6
Do not underestimate the social and practical burden of the gluten-free diet. Patients experience limitations in social life due to difficulty accessing gluten-free meals and concerns about food safety when eating out. 1 Education about celiac disease needs to be directed to catering personnel, as chefs' knowledge about celiac disease is often lower than that of the general public. 1
Recognize that gluten-free products are significantly more expensive than equivalent wheat-based foods and may be limited in rural areas. 1
Do not rely on symptoms alone to assess dietary adherence or disease activity—use objective measures including serology and, when indicated, repeat biopsy. 6