Living with Collagenous Gastritis

Ezra lives with collagenous gastritis (CG), one of the rarest conditions we’ve ever covered on the Major Pain podcast. Collagenous gastritis is characterized by a buildup of collagen in the digestive tract, which causes bumps or nodules to form. The most common symptoms are abdominal pain and anemia.

Ezra has been living with gastrointestinal issues since they were about 10 years old, when they were diagnosed with Crohn’s disease. This is an autoimmune condition in which the body attacks the gastrointestinal tract. When Ezra first started experiencing symptoms of collagenous gastritis they assumed it was just their Crohn’s disease acting up, but their doctor did a scope and discovered nodules. A biopsy revealed these nodules were not Crohn’s related, but Ezra’s doctor was completely stumped as to what they might be. Their doctor spent the next 5 years fighting to find an answer, even asking colleagues at conferences if they had heard of similar findings. Eventually this doctor discovered the little-known disease collagenous gastritis, and Ezra’s test came back positive.

In this episode of the Major Pain podcast, Ezra tells us what it’s like to live with this exceedingly rare disease. They have been told that only 200-1000 people have ever been diagnosed with collagenous gastritis. Ezra discusses the steps they have taken to treat CG including medication and diet, and how their two gastrointestinal diagnoses conflict with each other.

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