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The Pastore Podcast

May 22, 2020

Continuing with topics around Celiac Disease Awareness Month, Dr. Pastore discusses a condition that some diagnosed celiacs are still faced with - refractory celiac disease.

He covers what it is, how it’s diagnosed, how common it is amongst diagnosed celiac disease patients, the signs and symptoms to look out for, causes, treatments, secondary food reactions and what to discuss with your physician.


The 6 Steps to Diagnosing Refractory Celiac Disease:

1. Review the original diagnosis of celiac disease, going back as far as you can to in the medical records, including the original biopsy, serology, DNA, etc., and then you must have confirmation that the patient was following a strict GF diet for at least 1 year but still has symptoms and villi damage. You want to be certain there is no gluten contamination because that could rule out RCD quickly.


2. Identify any other condition that can negatively impact the villi including cancers such as intestinal lymphoma, inflammatory bowel disease such as Crohn’s disease, microscopic colitis, hypogammaglobulinemia (is an immune system abnormality that results in reduced antibody production making enough antibodies called immunoglobulins)  and believe it or not, even small intestinal bacterial overgrowth – if severe enough, and over use of NSAIDS or reaction to NSAIDS, etc.


3. Andoscopy and colonoscopy must be performed, with biopsies taken at both sites.


4. If possible, a capsule endoscopy (basically swallowing a camera in a pill format). You can obtain excellent images and identify some inflammation and ulceration.


5. If warranted, a CT scan (computerized tomography) and MRE (Magnetic resonance enterography) as well as a barium x-ray (A barium X-ray is a radiographic (X-ray) examination of the gastrointestinal (GI) tract. Barium absorbs x-rays and appears white on the images. These tests should be done particularly if there is any suspicion of lymphoma. There may be multiple diagnoses during the search for the cause behind suspected refractory celiac disease.


6. Fecal fat and pancreatic tests should be completed as well.