Celiac Disease Treatment and Follow Up

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Currently the only treatment for both celiac disease and non-celiac wheat sensitivity is lifelong adherence to a strict gluten-free diet, which means the elimination of wheat, rye, barley, triticale, and oats not labeled gluten-free. Annual physician follow-up is required to identify nutritional deficiencies, address symptoms you may still be experiencing, and confirm your adherence to the gluten-free diet.

Treatment

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 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. The gluten-free diet heals gluten-free-dietthe villous atrophy in the small intestine, causing symptoms to resolve. Following the gluten-free diet also helps prevent future complications, including malignancies.

Learn About the Gluten-Free Diet

Watch the Gluten-Free Diet Video

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.

Learn About Vitamins and Supplements

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.

Learn About 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.

Learn About Gluten in Medication


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
  • 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, liver enzymes, calcium, phosphate, 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 help you 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

Annually 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
  • Repeat bone densitometry at 2-3 years, if previously abnormal
  • For adults, consider repeat small intestinal biopsy at 3-5 years to assess dietary compliance and rule-out refractory celiac disease

Dietitian Follow Up

At Time of Diagnosis

At time of diagnosis, your dietitian should:

  • Provide gluten-free dietary counseling
  • Review nutritional needs including age-appropriate calcium and vitamin D intake
  • Recommend a gluten-free multivitamin

2 Month Visit

At your 2 month visit, your dietitian should:

  • Assess symptoms and coping skills
  • Conduct a dietary review

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
World Digestive Health Day WDHD May 29, 2016 WGO Handbook on DIET AND THE GUT

Do I Need a Repeat Endoscopy?

Some physicians recommend a repeat endoscopy and biopsy after 3-5 years on the gluten-free diet for adult patients. Others feel that annual blood testing is sufficient if you are not experiencing any issues. Serum tTg-IgA antibodies are a recommended indicator of long-term dietary compliance, but not of short-term compliance.

Patients who are not doing well on the gluten-free diet should have additional biopsies to rule out refractory celiac disease. Refractory celiac disease, also known as refractory sprue, affects up to 5% of patients. For these patients, the damaged villi in the small intestine do not heal from the gluten-free diet, and all other potential causes for this damage have been ruled out. These patients are usually treated with steroids and immunosuppressants. Read more about associated conditions in people with celiac disease who don’t feel completely better on the gluten-free diet.


Finding the Right Doctor, Dietitian, or Mental Health Professional

Celiac Disease Foundation can help you find the right healthcare practitioner to discuss symptoms, diagnose, and treat celiac disease. Our nationwide Healthcare Practitioner Directory lists primary care physicians, specialists, dietitians, and mental health professionals experienced in celiac disease and non-celiac wheat sensitivity.

Find a Healthcare Practitioner


Poorly Responsive Celiac Disease

It is estimated that up to 20% of people diagnosed with celiac disease have persistent symptoms while on a gluten-free diet. The most common reason for persistent symptoms is continuing to ingest gluten.

Learn about Poorly Responsive Celiac Disease


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