EOS Connections 2013 in Philadelphia was a great success. I’ve actually been back for a couple of weeks, but I’d like to share some of what I learned. Keep in mind that what I am about to share is not a scientific study, but anecdotal from my observations and discussions with patients.
There are many more adults being diagnosed with eosinophilic disorders than ever before. While the conference is designed for families, I spoke to a surprising number of adult patients.
I was not at all surprised to find families with lists of food restrictions similar to my son’s (wheat, dairy, eggs, soy, nuts) or with a few other items added to the list. I was also not surprised to hear from parents whose children had just a handful of food they can eat. I was surprised at how many patients had anywhere from three to fifteen foods they could eat. I quickly stopped asking what foods they were allergic to when they approached my table, and started asking what foods they were allowed to eat.
The set of patients avoiding a short set of foods (I never thought I’d say that allergies to five or six foods was a short set) seemed to correlate with the group that had noticeable symptoms. The patients avoiding very long lists of foods often were unable to detect whether they were having a reaction; the only way they were able to know there was inflammation was from an endoscopy. In some cases the long list of foods to avoid was due to elimination (of just about everything) and then adding back in one food at a time. It’s not surprising then that it takes so long to add foods back in if the only symptom is detectable via endoscopy.
The question I was most often asked was about flour blends. A large number of people had allergies to rice, corn, and even tapioca, taking off-the-shelf blends off the table. In most cases I was able to offer a solution. It takes at least one grain/bean/flour and one starch to make a blend. If there’s another grain or another starch to add, even better.
It struck me that parents of EGID kids (and the patients themselves) are extremely resilient. They are top-notch problem solvers and very flexible and I had the pleasure of meeting dozens of them during the conference.