Treatment & Follow-Up
Lifelong Adherence to the Gluten-Free Diet
The only treatment for celiac disease is to follow a strict gluten-free diet for life. This means avoiding foods and beverages that gluten, a protein found in wheat, rye, and barley.
In the United States, products may be labeled gluten-free if they contain less than 20 parts per million (ppm) of gluten, and fortunately there is a wide variety of foods and beverages that are naturally gluten-free.
It is important to focus on what you can eat rather than what you cannot as a strict, gluten-free diet heals the villous atrophy in your small intestine caused by celiac disease, improving symptoms and decreasing your risk for long-term health complications.
Vitamins and Dietary Supplements
Commonly, people with celiac disease are deficient in key nutrients for health, including fiber, iron, calcium, magnesium, zinc, folate, niacin, riboflavin, vitamin B12, and vitamin D, as well as in calories and protein. Deficiencies in copper and vitamin B6 are also possible, but less common. Supplementation of certain nutrients may be necessary to avoid long-term complications associated with nutrient deficiencies.
Bone Health
Loss of bone mass due to malnutrition is common in celiac disease. For many patients, a physician may order a bone density test at time of diagnosis to assess bone density. Similarly, a bone density test may also be ordered for children and adolescents who have experienced severe malabsorption, a prolonged delay in diagnosis, have bone disease symptoms, or are non-compliant with the gluten-free diet.
Medication
At this time, the only treatment for celiac disease is the gluten-free diet. Medication may be prescribed if co-occurring conditions are present, such as thyroid disease or dermatitis herpetiformis. In most individuals, following a strict gluten-free diet greatly reduces symptoms of dermatitis herpetiformis.
Gluten may be found in the inactive ingredients of medications, but it is extremely rare. It is recommended that you check the ingredients in your medications to ensure that they do not contain gluten.
Physician Visits
At Time of Diagnosis
At time of diagnosis, your physician should:
- Perform a complete physical exam, including an assessment of growth or weight trends over time and signs of nutrient deficiencies
- Order celiac serology (anti-DGP IgA and anti-tTg IgA) and DQ2/DQ8 genetic testing, if not previously obtained
- Order routine tests (complete blood cell count, iron studies, vitamin B studies, thyroid function tests with TSH, liver enzymes, calcium, phosphate, 25-hydroxy vitamin D, and zinc levels)
- Recommend family screening (DQ2/DQ8 genetic testing and celiac serology to include anti-tTg IgA, anti- DGP IgG, and total IgA to exclude IgA deficiency)
- Recommend a dietitian expert in celiac disease and the gluten-free diet to provide education and counseling
- Recommend a mental health professional, as needed, to support coping with a chronic disease, navigating the psychosocial challenges of a gluten-free diet, and managing barriers such as food access or insecurity
- Recommend a gluten-free multivitamin and additional supplementation as needed
- Assess hepatitis B, flu, and pneumococcal immunization status
- In pediatrics, ensure the patient is getting the necessary accommodations needed to support their gluten-free diet in school and other federally funded activities
3-6 Month Visit
You should see your physician 3-6 months after your initial diagnosis and annually thereafter. At the 3-6 month visit, your physician should:
- Assess symptoms
- Perform a complete physical exam
- Repeat celiac serology (anti-DGP IgA and anti-tTg IgA). DQ2/DQ8 genetic testing may be indicated based on clinical presentation.
- Repeat routine tests if previously abnormal
12 Month Visit
Celiac disease-specific antibodies tend to decrease or completely return within normal limits after 6-12 months on a strict, gluten-free diet. However, there is not enough evidence to show that this is a useful measure of dietary compliance. At this visit, your physician should:
- Assess symptoms
- Perform a complete physical examination
- Repeat celiac serology (anti-DGP IgA and anti-tTg IgA)
- Repeat routine tests if previously abnormal
- Assess hepatitis B immunization status if previously abnormal
Annual Visit
At your annual visit, your physician should:
- Assess symptoms
- Perform a complete physical examination
- Repeat celiac serology (anti-DGP IgA and anti-tTg IgA)
- Repeat routine tests if previously abnormal
- Assess hepatitis B immunization status if previously abnormal
- Assess symptoms
- Repeat bone densitometry at 2-3 years, if previously abnormal
- Consider repeat small intestinal biopsy at 1-3 years to assess intestinal healing and rule out refractory celiac disease
Dietitian Visits
At Time of Diagnosis
At time of diagnosis, your dietitian should:
- Evaluate clinical status, symptom course, and relevant biochemical markers to assess nutritional status, disease control, and potential complications
- Document food and nutrition intake by obtaining a comprehensive diet history
- Assess prescribed and over-the-counter medications and supplements for their potential gluten content and potential for food or drug interaction
- Provide clear education on the gluten-free diet
- Assess understanding of the gluten-free diet, application of dietary recommendations, relationship with food, and coping with dietary demands
- Collaborate with physicians and mental health professionals as indicated
- Assess gastrointestinal and extra-intestinal symptoms of celiac disease
- Assess factors that could affect quality of life, such as how the gluten-free diet will affect religious and social activities and economic status
Follow Up Visits
Follow-up visits should occur at a timeframe mutually agreed upon between you and your dietitian. Most people will have multiple follow up visits. At these visits, your dietitian should:
- Re-evaluate clinical status, symptom course, and relevant biochemical markers to assess nutritional status, disease control, and potential complications
- Document food and nutrition intake by obtaining a comprehensive diet history
- Re-assess prescribed and over-the-counter medications and supplements for their potential gluten content and potential for food or drug interaction
- Make adjustments to the gluten-free diet plan as indicated
- Re-assess understanding of the gluten-free diet, application of dietary recommendations, relationship with food, and coping with dietary demands
- Collaborate with physicians and mental health professionals as indicated
- Re-assess gastrointestinal and extra-intestinal symptoms of celiac disease
- Re-assess factors that could affect quality of life, such as how the gluten-free diet will affect religious and social activities and economic status