Management and Follow-Up
The only treatment for celiac disease is to follow a strict gluten‑free diet for life. This means avoiding all foods, drinks, medications, and supplements that contain gluten, as well as avoiding gluten cross‑contact, which happens when gluten from a food or surface gets onto a gluten‑free item. Even small amounts of gluten can make food unsafe for someone with celiac disease.
Symptoms on a Strict Gluten-Free Diet
Up to half of people with celiac disease still have symptoms even when they follow a strict gluten‑free diet. The most common reason is that they are still being exposed to gluten, either on purpose or without realizing it. Meeting with a dietitian who specializes in celiac disease can help find hidden sources of gluten.
Other reasons for ongoing symptoms may include food intolerance, such as lactose or fructose intolerance, or other digestive conditions like inflammatory bowel disease, lymphocytic or collagenous colitis, irritable bowel syndrome, or pancreatic insufficiency.
Some people may have “refractory” celiac disease. A gastroenterologist can help identify this. Refractory celiac disease affects up to 5% of people with celiac disease and means the small intestine does not heal even with a gluten‑free diet. People with this condition may need medications such as steroids or immunosuppressants.
Follow-Up for Adults with Celiac Disease
Follow‑up care for children, teens or adults with celiac disease usually happens 3 to 6 months after diagnosis with a doctor and a dietitian skilled in celiac disease. After that, follow‑up visits are recommended every 6 to 12 months until the blood tests return to normal, and then every 12 to 24 months.
Recommendations for monitoring adults with celiac disease include:
- Consultation with a dietitian skilled in the management of celiac disease
- Provide education and resources about the strict gluten-free diet for celiac disease
- Provide ongoing support to make sure the gluten‑free diet is nutritionally balanceliac disease and meets the person’s needs. For children, it is especially important that their diet supports healthy growth and development.
- Assess adherence to the strict gluten-free diet
Chronic exposure to gluten over many years can increase the risk of developing other health problems, such as malnutrition and bone disease, and can lower a person’s quality of life.
- Evaluate hypervigilance to gluten exposure which may affect quality of life
- Evaluate nutritional status
- Anthropometrics
- Measure weight, height, body mass index, weight change
- In children: monitor growth curves and expected growth velocity
- Measurement of celiac blood levels
- tTG-IgA (or other celiac blood test if advised by gastroenterology, like tTG-IgG, EMA or gliadins) every 6 months after diagnosis until levels normalize
- Persistently high tTG-IgA levels suggest gluten exposure
- Normalization of tTG-IgA is not a sensitive marker of normal small bowel tissue
- Measurement of nutritional labs to evaluate malabsorption and nutritional status
- At the time of diagnosis
- And if low at diagnosis, in follow up, while on a strict gluten-free diet
- Common nutritional labs tested:
- Iron studies (complete blood count (CBC), differential, ferritin) or other if advised by a health care practitioner
- Vitamin D
- Other less common nutritional labs tested on a case-by-case basis:
- Vitamin A
- Vitamin B9 [folate]
- Vitamin B12 [cobalamin]
- Vitamin E
- Copper
- Zinc
- Measurement of other labs, including:
- Liver function tests, such as ALT
- Thyroid function tests, such as TSH
- Assess bone disease (osteopenia or osteoporosis) and fracture risk
- In adults: bone densitometry may be ordered at diagnosis if significant weight loss and diarrhea. If it is abnormal then, it is often repeated in the future to follow bone health status.
- In children: bone densitometry may be ordered in children if significant weight loss and diarrhea; however, this is not a test commonly ordered in pediatrics.
- Repeat duodenal biopsy on a GFD
- Not routinely necessary, advised as per medical indication by gastroenterologist
- Helpful to confirm adherence to the strict gluten-free diet and to rule out other reasons if symptoms persist on a strict gluten-free diet.
- In children who are transitioning to adulthood
- Evaluate psychosocial adaptation to living with celiac disease including emotional support, independence with care and follow-up, developing life skills with support while living with a chronic condition
Adapted from:
- Elli L, Leffler D, Cellier C, et al. Nature Reviews Gastroenterology & Hepatology. 2024;21:198–215.
- Lee AR, Dennis M, Lebovits J, et al. Journal Human Nutrition Diet. 2025 Feb;38(1):e13380.
- Hill ID, Fasano A, Guandalini S, et al. J Pediatr Gastroenterol Nutr. 2016
