A Resource for Health Care Professionals: Follow-up Management of Patients with Celiac Disease

Prepared by the Professional Advisory Council, Canadian Celiac Association, March 16, 2016 (Click to download)

Celiac disease (CD) is a serious disorder that requires careful management and follow-up. The gluten-free diet (GFD) should not be started before celiac disease is diagnosed by positive serology and histology. This resource will assist primary care physicians to provide long-term patient care. These recommendations may be modified according to individual patient needs.

Six key elements for management of patients with celiac disease (Adapted from NIH 2004)

  1. Consult a dietitian skilled in the management of celiac disease
    • Nutritional assessment, nutrient deficiency treatment & education re: food labelling, nutrient content of GFD, menu & food preparation, cross-contamination, dining out, etc.
    • The GFD is costly, complex and challenging. Without proper education and support, patients are at higher risk of complications (i.e., osteoporosis, infertility, gastrointestinal cancers, lymphoma, nutrient deficiencies, etc.) and excessive weight gain.
    • Strict avoidance of ALL sources of wheat, rye and barley (and cross-contamination).
  2. Educate about the disease and family testing
    • Celiac disease, unlike other gluten related disorders, is a multi-systemic, malabsorptive, autoimmune disease with an increased prevalence of associated conditions.
    • First degree relatives have a 10-15% chance of having or developing CD.
    • For steps for screening for CD see: www.celiac.ca/pdfs/blood%20test-rev.pdf
  3. Lifelong adherence to a strict gluten-free diet and evaluation of compliance
    • Ingestion of as little as 50 mg of gluten (1/60 of a slice of bread) may damage the intestine.
    • Better adherence to a GFD is seen where there is a clear diagnosis, ongoing medical follow up and support by patient advocacy organizations, such as the Canadian Celiac Association (CCA).
    • Registered dietitian to provide timely education through initial individual or group settings and further follow up as needed.
    • Refer to gluten-free diet compliance score. www.celiac.ca/dietarycompliance
  4. Identification and treatment of nutritional deficiencies
    • Most patients benefit from a multivitamin supplement initially after diagnosis; ensure that supplement formulation is gluten-free.
    • Daily vitamin D and Calcium intake through foods and/or supplements (individualized and discussed with dietitian).
  5. Access to an advocacy group (e.g. Canadian Celiac Association & local chapter)
    • www.celiac.ca
  6. Continuous long-term follow-up by health professionals with expertise in celiac disease
    • In the vast majority of patients, symptoms begin to improve within a month of starting a strict GFD.
    • Patients are at risk of developing other autoimmune disorders such as thyroid disease.

Guidelines for Family Physicians for Following Patients with Celiac Disease

Management At diagnosis At 3 months At 6 months At 1 year Annual Symptom recurrence

Measure weight and BMI

Yes

Yes

Yes

Yes

Yes

Yes

Measure growth (child)

Yes

Yes

Yes

Yes

Yes

Yes

History and physical exam

Yes

Yes

Yes

Yes

Yes

Yes

Education re: gluten-free diet (GFD)

Yes

Yes

Yes

Yes

Yes

Yes

Refer to registered dietitian (RD) with expertise in GFD

Yes

Yes

By request

By request

Yes (Ideal)

Yes

Suggest CCA membership

Yes

Yes

Screen for nutrient deficiencies (1)

Yes

If previously abnormal

If previously abnormal

If previously abnormal

Yes

Celiac serology (TTGA, DGPA or EMA)

If not already done

Yes

Yes

Yes (2)

Yes

Serum ALT, AST, ALP, GGT

Yes

If previously abnormal

If previously abnormal

If previously abnormal

Yes

Serum TSH

Yes

Every 2 years

Bone density measurement

If signs of metabolic bone disease (3), severe malabsorption, or other risk factors for osteoporosis

In some adults (4)

If previously abnormal every 2 years

Re-refer to gastroenterologist

Abnormal serology or symptoms after RD review (5)

  1. Tests include CBC, iron studies or ferritin, folate, calcium, albumin, phosphate, ALP, vitamin D and vitamin B12 as appropriate for each patient.
  2. Although the serological tests are not robust enough to detect minor dietary indiscretions, a positive test is very suggestive of ongoing gluten exposure; repeat every 1-2 years.
  3. Premature osteoporosis, fracture with mild trauma with follow-up every 1-2 years until recovery.
  4. Peri- or postmenopausal women and men >50 yr of age or non-response to GFD at any age. If bone density measurement abnormal, repeat every 1-2 years until recovery. An abnormal bone density measurement in the GFD non-adherent patient may strengthen the argument for dietary compliance.
  5. Non-responsive celiac disease:
    • Failure to respond to 6-12 months of GFD or re-emergence of symptoms/laboratory abnormalities while on a GFD
    • Most common cause: intentional or accidental gluten exposure in the diet; ingestion of hidden gluten can come from a variety of unexpected sources
    • Consider concurrent irritable bowel syndrome (IBS), primary or secondary lactose intolerance, FODMAP intolerances, small intestinal bacterial overgrowth, microscopic colitis, secondary pancreatic insufficiency, eating disorders, food allergies, inflammatory bowel disease, gastroparesis, peptic ulcer disease & refractory celiac disease
    • Repeat endoscopy with special evaluation of small intestinal biopsy may be indicated

GFD = gluten-free diet, CBC = complete blood count, ALP = alkaline phosphotase, TTGA = tissue transglutaminase antibody, DGPA = deamidated gliadin peptide antibody,, EMA = endomysial antibody, TSH = thyroid stimulating hormone

Primary authors: Drs. Jenni Zelin, J. Decker Butzner, and RD Joyce Schnetzler

Follow-up Management of Patients with Celiac Disease
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