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About Maryellen

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    New Community Member
  • Birthday 01/30/1962

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  • Gender
  • Interests
    Beaches, boats and bays. 3 Celiac kids ages 11, 13, & 17.
  • Location
    Long Island, NY
  1. While I beleive it takes the world time to "catch up" with the understanding of what Celiac disease is, I don't go along with your logic. First, you CAN have a very, very bad reaction by just inhaling flour. My daughter sufferend a severe breakdown while in a classroom with kids blowing flour around after doing a baking project. I suffer from siezures from injesting less than a 1/2 a gram and if I inhale it I will begin the neuro-flare and I have gone into anaphylaxis from it. Myself and all three of my children have this and all three have completely different reactions. I don't expect the world to accomdate every aspect of my life as I am capable of handeling most situations at this point. I do however, feel that accomodations for the childrens' safety be in place with a 504 or IHP. As for myself, I bring my own lunch, I don't eat anywhere that the chef is not enlightened about the disease, I make sure if there is ANYTHING with food being brought to my home or place of business that it is wrapped and that the eating takes place away from the main area of congregating. I know it is difficult so I had to quit my job and find one that was accomodating and take a HUGE pay cut. Someone would have to go out on disability and try to get well but good luck trying to prove you are too sick to work. I think for now that awareness is key.
  2. I am of Irish, English and Scottish descent but I don't think it has to do with "nationality" per say. When I remember back to my childhood some of the elders from Europe knew that bread, cakes, cookies and gravies were not for "our type of people". My paternal grandmother was absolutely firm about it and I remember a pretty heated moment between my grandmother and my father one holiday about barring bakery cookies from the house. They always said that we should "stick to the old ways" and that our "mother lineage" had a particular style of cookery that kept us well. This was why so many of them wouldn't change from Cahtolicism because the explanation was that the Church had the only continuous written records internationally of births, deaths and marriages thereby tying one back to their original mother lineage. We were all supposed to stick to something called the "strict code of names" which ties this together. It really is quite fascinating to me and the more I research it the more it becomes understood that you could live in the NW of Ireland and be of the same mother tribe as someone in the Southern tip of Italy. My Dad's parents were from Ireland and Scotland, most were of a tribe called D'Anu. Every firstborn girl was named a derivation of Anna; Maryann, Oona, Enya and when they became the elder of the clan they put the "N" in front of the name, hence, the title "Nana" or "Nanny" in English. In Italy it would be Nona or Nonni, Anglo Norman is Nancy. Every first born son was supposed to be William but as years went on the names were jumbled around a bit. My mom's people were from England and Scotland and were Brigends and they have almost the same name sequencing. I later found out all Brigends are a direct descendant tribe of D'Anu. I believe now that many of them had Celiac in one form or another and consequently had horrible disease and suffering in their lives and ultimately died young.