If you’ve been diagnosed with Eosinophilic Esophagitis (EoE) it means you’ve had symptoms, a biopsy of >15 eosinophils per HPF and likely tried PPIs and had no improvement in symptoms. So the only true accurate way to know a diagnosis or a cure is the biopsy. BUT biopsies can be terribly inaccurate if not done effectively or just by themselves! WHAT???!!!
EoE Biopsies are Potentially Very Inaccurate
Why? For multiple reasons:
EoE is a “Patchy” Disease
EoE is a non-uniform “patchy” disease that may NOT present itself equally throughout the esophagus. This means that the concentration of eosinophils could be very high in one region of your esophagus, but almost non-existent in another part. The cells could be clustered mostly up high, down low, in the “distal” (away from the core of your esophagus) or “proximal” meaning center-mass.
As a result, to have the best chance of an effective diagnosis of the number of eosinophils in your esophagus, a good GI MUST take biopsies in more than one location. Preferably 3 or 4. Doctors that do multiple biopsies document that the number of eosinophils can vary WIDELY by esophageal location. Sometimes over 100 in one place, and under 15 in others in the SAME esophagus. Meaning that if the GI only took a biopsy from the one location (that read less than 15 eosinophils), the diagnosis would be that the patient DOES NOT HAVE EoE AT ALL, even though it’s raging in other parts of the esophagus.
Is a Clean Biopsy REALLY Clean?
As you can imagine, if your doctor takes a biopsy from ONE part of your esophagus, and says “yep, you’re clean”. It could be that the place where he/she biopsied WAS clean, BUT other parts of your esophagus are littered with eosinophils.
Eosinophil cells are not the actual perpetrator of esophageal damage. It’s the granules that the eosinophil releases that attack the esophagus and cause damage and inflammation. Think of it as the eosinophil is the gun, and the bullets are the granules. The eosinophil is called to action, and it fires the granules to protect the esophagus (not knowing it’s not supposed to be doing that). The granules attack and the result is damage and inflammation. The more cells, the more granules, the more damage and inflammation.
The added problem is that when eosinophils release these little granules the cell breaks apart (sort of like exploding) so it’s NOT a full intact eosinophil cell anymore. PROBLEM! Many/most pathologists ONLY COUNT INTACT EOSINOPHIL CELLS!!! That means you could have red-hot active inflammation happening with eosinophils spewing granules everywhere, but have a LOW eosinophil count because they aren’t fully intact.
What does this mean for EoE sufferers? Well it means they need to talk to their GI doctors about what sort of biopsy they will be performing, and request a thorough biopsy. Many GI’s today still believe a simple single-location (or even double) biopsy will suffice, and risk mis-diagnosis.
The Future of Diagnosis
EoE expert GIs recognize the shortcomings of esophageal biopsies in treating EoE.
First – Because of the inherent weaknesses of the accuracy of biopsies mentioned above.
Second – They’re expensive and time-and-resource consuming because it takes an out-patient procedure where the patient has to be put under anesthesia, every time they need to see how the patient is responding to treatment.
The future of EoE diagnosis will likely turn to other mediums. For example, scanners have been developed that can accurately scan the ENTIRE esophagus and detect the presence of eosinophil inflammation activity, thus reducing the risk of mis-diagnosing because of limited focus biopsies. These scanners also do not require hospitalization or out-patient surgery since they can be done in a GI’s office. Scanners are still undergoing development, and have not been approved by the FDA for use.