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Celiac Disease Referral Guidelines
Celiac disease is a chronic autoimmune condition that affects approximately 1% of the global population. When patients with celiac disease eat gluten (a protein found in wheat, barley and rye), this initiates an immune response that leads to inflammation and damage to the nutrient-absorbing villi in the small intestine. Both inflammation and malnutrition caused by celiac disease can lead to severe limitations of bodily functions and complications that have significant effects on children and their families. The only treatment for celiac disease is a strict, lifelong gluten-free diet.
- If you suspect celiac disease in your patient, you must first order serological testing. Most patients can be diagnosed through obtaining levels of total IgA, tTG-IgA (tissue transglutaminase) and EMA-IgA (endomysial antibody).
- For patients demonstrating IgA deficiency, IgG-mediated testing needs to be performed. In this case, it should include a tTG-IgG and a DGP-IgG (deamidated gliadin peptide).
- Current North American guidelines recommend an upper endoscopy to confirm the diagnosis by intestinal biopsy. It is important to include a sample from the duodenal bulb in addition to the duodenum.
- The only treatment for celiac disease is a strict, lifelong gluten-free diet. A knowledgeable dietitian or education specialist should educate the family about the gluten-free diet. A member of staff should also review with the patient and his or her family the rights the patient has in being accommodated at school under the ADA.
- Please refer to the “Resources for Families” page on the Children’s National Celiac Disease Program site for this information.
- In the first year of diagnosis, we recommend follow-up at 3 months, 6 months, and 1 year post diagnosis. After 1 year, we recommend annual visits.
- At these follow-up appointments, it is important to run a number of blood tests. We typically test CBC, CMP, Vitamin D, Iron & TIBC, Ferritin, Free T4, TSH, tTG IgA or IgG (depending on the patient), and a quantitative Hepatitis B Surface Antibody.
You should refer your patient for any of the following reasons:
- Celiac antibodies have not returned to normal after a year on the gluten-free diet
- If your patient has a particularly complicated diagnosis or complication (such as refractory celiac disease)
- If you do not feel your office can thoroughly educate the patient and his or her family about the gluten-free diet
- If you suspect your patient is eating gluten, either on purpose or accident
- If they prefer a multidisciplinary approach to treatment
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with the patient’s name, DOB, and copies of the relevant diagnostic bloodwork/pathology.
- Our Celiac Disease Multidisciplinary Clinic offers care with our gastroenterology team, psychologist, dietitian and education team.
- Our psychologist is always available to teach patients skills such as coping, adjustment, and adherence to the gluten-free lifestyle, as well as resolve tensions related to having a chronic condition. Our dietitian can help ensure a well-balanced gluten-free diet, as well as determine the need for any vitamins, minerals, and supplements. Our education team provides everything you’ll need for a successful gluten-free lifestyle, such as assistance with 504 Plans for accommodations at school, gluten-free diet education, and adherence assessments, among other services.
- Newly diagnosed patients will visit with our gastroenterology team, psychologist and education team at the first appointment. At the 3-month follow-up appointment, patients will meet with our nurse practitioner and dietitian. We will discuss subsequent follow ups at this appointment based on the patient's specific needs. Patients with an existing diagnosis but who are new to our clinic will meet with all 4 specialties at their initial visit. Subsequent follow ups will be discussed at this appointment based on the patient's specific needs.
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Outpatient Appointment Referral Pads (PDFs)
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