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Eosinophilic esophagitis (eosinophilic oesophagitis) is an allergic inflammatory condition of the esophagus, and also ca... Eosinophilic esophagitis (eosinophilic oesophagitis) is an allergic inflammatory condition of the esophagus, and also called allergic oesophagitis. Symptoms are swallowing difficulty, food impaction, and heartburn. More

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  •   Cheryl commented on this post about 2 years ago
    Sending out a request to all of you EoE members today: How do you simply explain to others why you can't eat something (when the reason isn't food allergy anaphylaxis)? I'm officially off of all chicken (including broth) to see if my EoE improves. Which is fine. But people are having a hard time understanding that something I eat now could make my esophagus smaller for food to get stuck in it later. Truthfully, I'm having a hard time with that concept, too.
    • Cheryl
      So, we're not an EoE family, but we face the same challenge with explaining the incredibly limitING extent of my son's mast cell reactions, or for thSo, we're not an EoE family, but we face the same challenge with explaining the incredibly limitING extent of my son's mast cell reactions, or for that matter any of my own myriad food intolerances. In my son's case, he reacts to anything but the 15 or so foods to which he's already de-sensitized. Before diagnosis, he didn't grow a lick and his stomach lining came out in his diaper. In other words, not anaphylactic - but clearly not something to mess around with. Today, now that his stomach lining is all healed up, if he tries something new he'll likely have some minor stomach upset and skin reactions - but the neurochemicals released in all those mast cells triggering can make for an emotionally debilitating mess that then evolves into temporary neurological symptoms - like not being able to see, or write in a straight line. So again, not ana, but still not a functional state. And, reactions can be immediate or take time to build, making it impossible to trial more than 1 thing at a time (patiently!), and can also be triggered by things totally outside of our control, like having to take antibiotics, seasonal allergies or stress.
      Thus, we explain his situation as, "death by 1,000 cuts, so you prevent all the cuts you can to make room to absorb the ones you can't." And, I've found with all my own food intolerances, people take their cues from me. So if I make clear it's an absolute "no, though in my case it's not anaphylactic" then most people seem to respect it. I know EoE presents such unique challenges - I hope something in our approach can be helpful!
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    • Nicole at food allergy pantry
      Thanks, Cheryl! You have an awful lot on your shoulders. This is helpful. I find myself getting wordy about it or just shutting down (not a good long-Thanks, Cheryl! You have an awful lot on your shoulders. This is helpful. I find myself getting wordy about it or just shutting down (not a good long-term solution). Baby steps, like with everything, I suppose. Have a great weekend!
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    • Cheryl
      Yes - baby steps. When I first lost all my foods, it was for the little baby I was nursing - and I found it pretty easy to ask other grownups to help Yes - baby steps. When I first lost all my foods, it was for the little baby I was nursing - and I found it pretty easy to ask other grownups to help accommodate "to help my baby." But when I weaned him and discovered that long-standing symptoms came back again when I tried to reintroduce foods back into my own diet, well I found it very difficult to ask for those exact same accommodations when it was for my own body's needs. I decided that said a lot more about me than it did about the culture around me, and that I ought to work on that!   More ...
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