Why Aren’t They Diagnosing Us?

The past few weeks have seen a boom of articles related to eosinophilic esophagitis (EE), making for some challenging reading. Before discussing any articles, I offer my always-disclaimer that I am not a medical specialist of any kind. Plus, I stink at statistics. I’m just an interested patient, and approach the literature as such.

What especially caught my eye was a study from the University of North Carolina: “Practice Patterns for the Evaluation and Treatment Eosinophilic Oesophagitis” (Alimentary Pharmacology and Therapeutics, 2010 Dec; 32 (11-12): 1373-82).

If you spend any time at all reading, say, the bulletin boards over at APFED, you start running into tales of folks who must go round and round, pillar to post, doc to doc, before discovering what ails them.

Turns out, according to this survey of practicing gastroenterologists, that more of them than you might think aren’t all that informed about diagnosing and treating EE. The authors base their conclusion on deviations from “consensus guidelines” about the diagnosis and treatment of EE that were published in 2007.

The guidelines advise diagnosing EE when: a) the patient has symptoms consistent with EE; b) esophageal biopsies show 15 or more eos per high powered field (a way of providing a standard measurement when looking at things under magnification, which can vary); and c) other causes have been ruled out, especially GERD, as determined by a course of proton pump inhibitors (PPIs) that fails to alleviate the symptoms and eradicate the eos.

The authors write: “Although our a priori hypothesis was that real-world practices would strongly diverge from consensus guidelines, we were surprised to find the magnitude of this divergence in both academic subspecialists and community practitioners.”

If the authors are right, what does this mean for us as EE patients, current or potential? Well, there seem to be more than a few gastros out there not up-to-date on EE, or else who may choose to operate from diagnostic criteria that aren’t in line with the consensus practice. There are undoubtedly sometimes reasons to do so, but the moral of this one seems to be that, if you think something is amiss (or even if you don’t), it behooves you to learn, learn, learn and ask, ask, ask. And, boy, is there still a need to educate.

Of course, one factor that seems to make some cases of EE tough to diagnose is that it can be such a good GERD mimic, and the relationship between the two conditions is poorly understood (even controversial, for those who find controversy in such things).

That’s what makes a second study out of North Carolina especially interesting. I’m mostly out of my depth with this one, but “Tryptase Staining of Mast Cells May Differentiate Eosinophilic Esophagits from Gastoesophageal Reflx Disease” (American Journal of Gastroenterology, 2010 Oct 26) seems to show that, in addition to all those eos that get pulled out during an endoscopy with biopsy, EE patients have a higher level of mast cells in the tissue samples than do GERD patients. So, there could eventually be promise in using the presence of mast cells to help diagnose EE, which would seem potentially to increase the ease and likelihood of doing so in the first place.

And just what are all those mast cells up to? For that, you might want to check out “Mast cells infiltrate the esophageal smooth muscle in patients with eosinophilic esophagitis, express TGF-β1, and increase esophageal smooth muscle contraction” (Journal of Allergy and Clinical Immunology, 2010 Nov. 1). On that one, I’m so far out of my league that the best I can say is that they’re up to mighty bad stuff.

Finally, one last recent publication: “Recent Advances in the Treatment of Eosinophilic Esophagitis” (Expert Review of Clinical Immunology, 2010 Nov; 6 (6): 929-37). Some days it seems awfully far off, but there are folks out there working on this for all of us.

Happy reading. To get hold of the articles mentioned here, contact your local library and ask if they can order them for you.

About eosgirl

Trying to stop worrying and love my eosinophilic gastrointestinal disease.
This entry was posted in Eosinophils, In the News, Research and tagged , , , . Bookmark the permalink.

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