A child and an adult staring at each other while eating green apples.

Lifelong Adherence to the Gluten-Free Diet

Celiac disease is a chronic autoimmune disease, which means that you cannot “grow out” of it. The treatment for both celiac disease and non-celiac gluten/wheat sensitivity is lifelong adherence to a strict gluten-free diet. Only food and beverage with a gluten content less than 20 parts per million (ppm) is allowed.

Vitamins and Dietary Supplements

Commonly, people with celiac disease are deficient in 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. After treatment with the gluten-free diet, most patients’ small intestines recover and are able to properly absorb nutrients again.

However, patients may continue to be vitamin B deficient as the gluten-free diet may not provide sufficient supplementation. This can be remedied with a daily, gluten-free multivitamin. The multivitamin should not exceed 100% of the daily value (DV) for vitamins and minerals. Calcium and vitamin D supplementation may also be prescribed by your physician if your intake is not sufficient.

Bone Health

For adults, your physician should order a bone density test at time of diagnosis to test for osteopenia/osteoporosis (thin bones). 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.

If you are at high-risk for bone fracture, you will be prescribed dietary supplements and medication to correct this.

Medication

Medication is not normally required except in some cases of dermatitis herpetiformis, in which medication such as dapsone or sulfapyridine is administered for a short period of time to control the rash. In most individuals, following a strict gluten-free diet greatly reduces symptoms of dermatitis herpetiformis.

The true chances of getting a medication that contains gluten is extremely small, but as a protector of your health, you should eliminate all risks by evaluating the ingredients in your medications.

Physician Follow-Up

At Time of Diagnosis

At time of diagnosis, your physician should:

  • Perform a complete physical exam including determination of BMI and examinations for enlarged lymph nodes and occult blood in the stool
  • For adults, and children with a long-delay in diagnosis, severe malabsorption or bone health isues, order bone densitometry
  • 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 functions tests with thyrotropin , liver enzymes, calcium, phosphate, 25-hydroxy vitamin D, copper, 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 exlude IgA deficiency)
  • Recommend a dietitian expert in celiac disease and the gluten-free diet to provide education and counseling
  • Recommend a mental health professional to address the psychosocial aspects of going gluten-free and coping with a chronic disease, as needed
  • Recommend a gluten-free multivitamin and additional supplementation as needed
  • Assess hepatitis B, flu and pneumococcal immunization status

3-6 Month Visit

You should see your physician 3-6 months after your initial diagnosis and annually thereafter to identify nutritional deficiencies, address symptoms you may still be experiencing, and confirm your adherence to the gluten-free diet. Patients on a strict gluten-free diet should have a negative anti-tTg IgA test at the 6-12 month mark. At the 3-6 month visit, your physician should:

  • Assess symptoms
  • Perform a complete physical exam, on indication
  • Order celiac serology (anti-DGP IgA and anti-tTg IgA)
  • Repeat routine tests, if previously abnormal

12 Month Visit

At your 12 month visit, your anti-tTg IgA level should be as close to zero as possible. At this visit, your physician should:

  • Assess symptoms
  • Perform an abdominal physical examination, on indication
  • Order celiac serology (anti-DGP IgA and anti-tTg IgA)
  • Repeat routine tests
  • Assess hepatitis B immunization status, if previously abnormal

Annual Thereafter

At your annual visit, your physician should:

  • Assess symptoms
  • Perform a complete physical exam
  • Order celiac serology (anti-DGP IgA and anti-tTg IgA)
  • Repeat routine tests
  • Order other tests as clinically indicated
  • Recommend a flu shot
  • Recommend a dietitian to provide education and counseling as clinically indicated
  • Recommend a mental health professional to address the psychosocial aspects of going gluten-free and coping with a chronic disease, as needed
  • Repeat bone densitometry at 2-3 years, if previously abnormal, and for adolescents non-compliant with a gluten-free diet
  • For adults, consider repeat small intestinal biopsy at 3-5 years to assess dietary compliance and rule-out refractory celiac disease
A doctor assessing the sides of a woman's stomach during a check-up.

Dietitian Follow-Up

At Time of Diagnosis

At time of diagnosis, your dietitian should:

  • Provide gluten-free dietary counseling, including education on the inclusion of oats, cross-contamination,  and label-reading for foods, medications and supplements
  • Review nutritional needs including age-appropriate calcium and vitamin D intake
  • Recommend a gluten-free multivitamin

2–4 Week Visit

At your 2 month visit, your dietitian should:

  • Assess symptoms and coping skills
  • Conduct a dietary review

6–12 Month Visit

At your 12 month visit, your dietitian should:

  • Assess symptoms and coping skills
  • Conduct a dietary review

24 Month Visit

If you are still symptomatic or are struggling with the gluten-free diet, your physician may refer you to dietitian for additional counseling and education. At this visit, your dietitian should:

  • Assess symptoms and coping skills
  • Conduct a dietary review