Strange Community

When I was diagnosed with eosinophilic gastroenteritis as a teenager in the early 1980s, we were blissfully ignorant. To be sure, there was some inkling of what we were getting into. My recollection is that the pediatric GI fellow practically burst with excitement as he announced the diagnosis. How many hours in the library that must have required!

My dad is a physician, so he pulled a journal article or two. But that was it. We received the diagnosis, I took the prednisone, we went about our business.

Carrying on wasn’t so hard to do, in part because my case wasn’t hugely disruptive. Sure, my family had grown accustomed to pulling the car over on short notice so that I could vomit at the side of the road from time to time. And I kept large stacks of books in the bathroom for the painful crampy hours spent there.

But I went to school every day, I danced, I spent a few months on an unsuccessful elimination diet, the prednisone provoked no noticeable side effects. Life went on, until I outgrew the vomiting and simply considered myself a person with a delicate stomach, residual blood eosinophils, and the stubborn determination to be done with it all.

Fast-forward a quarter-century, and the eosinophil landscape is hugely different. By the time accommodation of my delicate stomach gave way to the grudging acknowledgment that I felt rotten and that, oh, yes, I sometimes had to dart from the table to spit out food I couldn’t swallow, I was able to jump online and immerse myself in eosinophilia.

There are the journal articles, of course, grown far more copious in the last two decades. Most can even be identified—if not always retrieved—by a layperson with access to a computer or a library.

Then there’s the community. Blogs and discussion boards. Videos and news stories.  Treatment centers with scads of online articles. Support groups.

Sometimes, I wonder if things would have unfolded differently for me had today’s resources been available to my teenage self and my family. On the one hand, we might have scared ourselves silly. As I’ve noted elsewhere, there are so many people suffering so much more than I ever have with this illness and its effects. Hearing about those possible outcomes would probably have overwhelmed me. If my parents had any idea at the time, they certainly kept it to themselves.

On the other hand, with greater knowledge, I might have been far less likely to have ignored the persistent symptoms of my 20s and 30s. It recently came to me that I will never again be able to not have a gastroenterologist. Really, though, I should have had one all along. Perhaps I also would have had more success with diet had today’s awareness about allergens and ingredients been better understood and more widely shared.

Although I am a very private person—intensely private, jealously private—I have just done something uncharacteristic. Before hitting “publish” on this, my fifth EosinophilGirl post, I’ve chosen to open this blog to search engines and Web crawlers, just in case there’s anything here that can be useful to someone, somewhere.

Do I have anything of value to say? Who knows. But I have become increasingly aware of an eos community out there and, by dint of these leukocytes that no one else has heard of, I seem to be part of it. So, here I am. Albeit as anonymously as I possibly can manage.

About eosgirl

Trying to stop worrying and love my eosinophilic gastrointestinal disease.
This entry was posted in Case of EosGirl, EGID Stories, Reflections and tagged , , , . Bookmark the permalink.

4 Responses to Strange Community

  1. Helen Love says:

    Wow, you were lucky to get diagnosed back then. I am also going public with my story, albeit not under my real name. My son has EE, and I am a pre-med student and I want to study, what else, immunology! Keep blogging, looking forward to reading:)

  2. eosgirl says:

    Thanks for your note! I took a look at your blog and it sounds like you have quite a journey behind you, as well as ahead of you. Whenever I start to feel sorry for myself, I remember how very fortunate I’ve been, both because my EGIDs have been so much less severe compared to others, and because I happened to be lucky enough to be in a place at a time where my EG was diagnosed reasonably quickly. Hang in there! It’s so exciting to hear about your career ambitions. There’s so much still to figure out.

  3. @EGIDgirl says:

    I thought EGID is a recent discovery?!

  4. eosgirl says:

    No. In fact, the earliest report that I can find in the literature is from 1950! (At least for eosinophilic gastrits). What is new is a huge increase in the number of diagnosed cases of eosinohilic esophagitis. That’s probably been around for a while, too. I’ve seen some reports that what’s sometimes called “steakhouse syndrome”–guys (or mostly guys) getting food stuck in their esophagus when downing a big steak–were probably actually due to EoE). However, there’s a lot more of it now and it’s better recognized. Seems to coincide with increase in asthma and other food allergies.

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