Q: I have a confirmed diagnosis of celiac disease (CD). Do I need to see a gastroenterologist (GI doctor) for ongoing follow-up or can I just see my primary care provider regularly?

It is not clear from the research who should monitor the follow-up of patients with CD and how often.¹  Various studies have remarked on follow-ups with primary care providers, gastroenterologists, or a dietitian with a doctor available, if needed. Regardless of the provider, long-term monitoring, including an annual follow-up, of a patient with CD is universally encouraged.¹

Here are the recommendations from the American College of Gastroenterology’s (ACG) clinical guidelines: diagnosis and management of celiac disease that are specific to monitoring patients with CD:¹

1. “People with CD should be referred to a registered dietitian who is knowledgeable about CD in order to receive a thorough nutritional assessment and education on the gluten free diet (GFD).
2. People with newly diagnosed CD should undergo testing and treatment for micronutrient deficiencies. Deficiencies to be considered for testing should include, but not be limited to, iron, folic acid, vitamin D, and vitamin B12.
3. People with CD should be monitored regularly for residual or new symptoms, adherence to GFD, and assessment for complications. In children, special attention to assure normal growth and development is recommended.
4. Periodic medical follow-up should be performed by a health care practitioner with knowledge of CD. Consultation with a dietitian should be offered if gluten contamination is suspected.
5. Monitoring of adherence to GFD should be based on a combination of history and serology (IgA TTG or IgA [or IgG] deamidated gliadin peptide antibodies).
6. Upper endoscopy with intestinal biopsies is recommended for monitoring in cases with lack of clinical response or relapse of symptoms despite a GFD.
7. Monitoring of people with CD should include verification of normalization of laboratory abnormalities detected during initial laboratory investigation.
8. Patients with non-responsive celiac disease should be evaluated carefully to identify and treat the specific etiology in each patient.
9. Early steps in the evaluation should include measurement of celiac serologies and a thorough review of the patient’s diet by a dietician who is experienced in CD management.”

Additional treatment and monitoring recommendations found in the literature include:

1. Referral to a support group²
2. Timing of bone density studies (a test for bone loss) since osteopenia and, less often, osteoporosis are common in CD^1,2
3. Discussion and timing of the pneumococcal vaccination since CD is associated with hyposplenism²

At the Celiac Center at Beth Israel Deaconess Medical Center (BIDMC), we also recommend follow-up with a registered dietitian and physician knowledgeable in CD management.

Here is a general timeline that we use at BIDMC for follow-up with a physician (adapted from the ACG Clinical Guidelines):^1,3

First visit: suspected celiac disease

Work-up: Blood test, endoscopy, colonoscopy (if needed)

Second visit: diagnosis of celiac disease

1st follow-up: 3-6 months after diagnosis

2nd follow-up: 1 year after diagnosis

Annual follow-up

Resource
Mendo R. What to Expect at your Gastroenterologist’s Visit. July 30, 2018. Celiacnow.org. https://www.bidmc.org/-/media/files/beth-israel-org/centers-and-departments/digestive-disease-center/celiac-center/celiacnow/what-to-expect-from-your-gastroenterologists-visit.pdf?la=en

References

Rubio-Tapia A, Hill ID, Kelly CP, et al. ACG clinical guidelines: diagnosis and management of celiac disease. Am J Gastroenterol. 2013 May;108(5):656-76.

Ciclitira PJ. Management of celiac disease in adults. Up to Date. January 9, 2019. Accessed April 26, 2019.

Mendo R. What to Expect at your Gastroenterologist’s Visit. July 30, 2018. Celiacnow.org
https://www.bidmc.org/-/media/files/beth-israel-org/centers-and-departments/digestive-disease-center/celiac-center/celiacnow/what-to-expect-from-your-gastroenterologists-visit.pdf?la=en

Accessed April 25, 2019.

Note: This information is provided by NCA and Melinda Dennis, NCA's Senior Consulting Dietitian. This information is meant for educational purposes and is not intended to substitute for personalized medical advice or replace any medical advice provided directly to you by your health care provider. This information can be printed and used in consultation with your physician or dietitian. No liability is assumed by NCA, Ms. Dennis or her nutrition consulting service Delete the Wheat, LLC. by providing this information.