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Migraines
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Eosinophilic Esophagitis
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Oral Food-Pollen Allergy Syndrome
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  •   Cheryl commented on this post about 4 years ago
    Nicole at food allergy pantry
    Nicole at food allergy pantry Eosinophilic Esophagitis
    Editing
    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!        More ...
      4 years ago ·
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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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      4 years ago ·
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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 ...
      4 years ago ·
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  •   Cheryl commented on this post about 5 years ago
    Cheryl
    Cheryl Migraines
    Editing
    I spent most of this afternoon and evening with an outrageous headache and what Pure and Peanut Free and I decided was most likely a visual migraine - ugh! I've been getting headaches much more frequently now and have been blaming it on a bad disc in my neck but I'm beginning to think it may be migraines. Would love to hear what triggers you've figured out for your migraines - and more than that, what works to make it a little bit more bearable! Thanks!
    • dairyfreegina
      I get migraines too and sometimes the ocular kind where the only remedy is to lay down in a completely dark room until it passes. Those are the worst I get migraines too and sometimes the ocular kind where the only remedy is to lay down in a completely dark room until it passes. Those are the worst because that migraine totally wipes me out and takes at least a day to recover from. I have a bad disc in neck too and sometimes the headaches are caused by that. Other times weather related, sometimes the angle of the sun and more commonly due to allergies.Oftentimes I wear sunglasses even indoors because light seems to trigger them. Sometimes there is no rhyme or reason for the migraine. When I'm at my worst I have to take Imitrex. I also have a supplement form the compounding pharmacy I go to that contains Fever few and Butterbur. I should be taking that everyday . Would also love to hear wheat other migraine sufferers do for their headaches.  More ...
      5 years ago ·
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    • Cheryl
      That sounds so miserable, Gina! I'm old to meet tension headaches but new to anything that i think might be called migraines and not super excited to That sounds so miserable, Gina! I'm old to meet tension headaches but new to anything that i think might be called migraines and not super excited to be alone for the ride. Thanks for sharing your experience - would also love to hear what works for others!  More ...
      5 years ago ·
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  • dairyfreegina
    dairyfreegina joined the group, Oral Food-Pollen Allergy Syndrome
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  • dairyfreegina
    dairyfreegina joined the group, Migraines
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