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mannabbe

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Everything posted by mannabbe

  1. mannabbe

    ARCHIVED Fragile

    mannabbe replied to a topic in Coping with Celiac Disease

    Libby, I think that for many of us, the emotional toll of gluten ingestion is unavoidable. A woman doctor friend of mine told me that she considers gluten to behave as a "neurotoxin" for many of us. I've been gluten-free for 3 years, and if I have a bit of gluten accidently, I'll be on the verge of tears for 24 hours. The woman who sits next to me a work...
  2. mannabbe

    ARCHIVED Hi From Me

    mannabbe replied to wwebby's topic in Coping with Celiac Disease

    Terri, I live in Seattle - and I'd love to know the name of the restaurant you went to where the chef came to your table 4 times! I highly recommend Wild Ginger downtown - the majority of their menu is either already gluten free, or can easily be made gluten free. Also, try to make time for a trip to Flying Apron Bakery in the U District. You won't believe...
  3. mannabbe
    Sara, Many of us have recurring depression issues that are directly related to gluten ingestion - the woman who sits next to me at work is also celiac. Whenever either of us has a gluten exposure, that person is extremely depressed (i.e. on the verge of tears) for about 24 hours. I encourage you to tell your 3 year old that you have figured out what's wrong...
  4. mannabbe

    ARCHIVED Hi From Me

    mannabbe replied to wwebby's topic in Coping with Celiac Disease

    Gillian, I agree with your statements about "allergy" not representing our auto-immune condition - but what out Terri, who is eating out in restaurants all week? That's where the rubber hits the road for me - what do I say in a restaurant? My experience is that restaurant staff snap to attention when they hear the word "allergy" and that "gluten intolerance...
  5. mannabbe
    Heather, It would have been fun to run into you on Maui! Here's a summary of my trip, which contains different info from Heather's, for the most part: Near the Airpot: "Down to Earth" is a health food store on Dairy road, across from the large shopping center where Borders Books is located. This store, and Mana Foods in Paia, are the best health food...
  6. mannabbe

    ARCHIVED Leaving

    mannabbe replied to a topic in Board/Forum Technical Help

    Sara, It's nice to have a doc on the Board (and do you own a Bichon also? we have a sweet Bichon puppy named Rosy). You are probably aware that all children in Italy are screend for celiac by age 6 (Healthlink article by E. Early) - I'm wondering if you have the ability, especially since you are a ped doc, to screen all your patients for celiac? I'm curious...
  7. mannabbe
    I will post all my gluten-free Maui highlights when I return in mid-April, but in the meantime, I wanted to report that the St. John's listerserv has made their archive searches MUCH easier. Go to Open Original Shared Link and select "search archives" I did a search on Maui from Jan 2000-Jan2004 and came up with a ton of gluten-free information for...
  8. mannabbe
    I got my restaurant card when I joined the gluten intolerance group (GIG at gluten.net). The card helped me shop at the beginning (when I couldn't remember what I was supposed to eat), but hasn't helped much at restaurants. At restaurants with chefs (the white table cloth places!), everyone is already trained on this issue and all I need to say is "no...
  9. mannabbe
    Hi Laura, Are there any celiac support groups in your area? That's be the best way to find a really great doc, and to get the best help for your children. Most doctors, in my experience, are pretty clueless - so you'll save time and heart ache by getting a recommendation. I'm really really happy for you that you've been diagnosed! I was diagnosed when...
  10. mannabbe
    Wendy, I hate to even admit to you how I solved the eating out problem. After getting sick more times than I can count (and I also have a celiac 7 year old), we almost completely stopped eating out. Except once a month, or once every 2 months, we now go out to fairly expensive restaurants. Because I go to the same expensive restaurants regularly, the...
  11. mannabbe
    Traci, That is an absolutely remarkable story, thanks for sharing it. It is a miracle that you figured out your daughter's situation in spite of the lack of help from the MDs you saw. Like you, a naturopath is the first one who tested me for celiac (after no one else could figure out what was wrong with me). You are a wonderful mother! Laurie
  12. mannabbe
    THe topic is drifting to blood type diets (which our family has found works for us), but I must circle back to the original topic of.,.....celiac is everywhere! It's been 3 years since my diagnosis, and not only do I still see celiac everywhere (much to the annoyance of a few of my patient friends ), but quite a few people I know have been diagnosed...
  13. mannabbe
    It has never seemed quite right to me that celiac isn't considered an allergy just because it doesn't trigger an IgE response (but instead triggers an IgG and IgA response). There's a wonderful book by Jonathan Brostoff (Food Allergies and Food Intolerances) that talks about the differences between allergies & intolerances and the history of western...
  14. mannabbe
    A doctor friend of mine explained to me that there's a protein in oats that is very similar structurally to the protein in wheat gluten - and that's why some people are sensitive to both. I have met a few celiacs (including my friend's daughter) who get horribly sick from oats (even uncontaminted oats). There was a link distruted on the St. John's...
  15. mannabbe
    Have you heard about leaky guy syndrome? Here's one (of many) info links: Open Original Shared Link The basic idea is that when your gut is torn apart (which happens with celiac), your intestines stop functioning as a barrier to undigested food, yeast, etc, and lots of stuff that isn't supposed to get into your body DOES! When the undigested proteins...
  16. mannabbe
    Mariann, Have you received the tests results on your children yet? Your question about eating out was interesting for me to reflect on. About 6 months after my diagnosis (3 years ago), I completely stopped eating out. I bet I went a year without eating out more than 2 times. Frankly, I was terrified - and was sensitive to so many foods that eating...
  17. mannabbe
    Rod, I too have developed anxiety issues since being diagnosed with celiac disease 3 years ago. I was initially fairly easy going about being gluten-free until I had a reaction from inhaling flour in the kitchen at my daughter's school (making gingerbread houses 1 year ago at Christmas). That was the straw that broke my little osteoporosis back (so to...
  18. mannabbe
    Hey there Deb, The hot shopping places on the North end of Seattle are Whole Foods (64th & Roosevelt) and the Greenlake PCC (NW corner of the lake on 99), which has more gluten-free products that the other PCC stores. You also MUST go to the Flying Apron bakery, which has a small walk-up window in the University District; all their products are vegan...
  19. mannabbe
    Wendy, You are in luck! I am traveling to Maui in April with my 7 year old daughter (both of us have celiac), my husband - AND a friend and her daughter who are both gluten-free. I promise to take good notes on restaurants and food stores and get back to you. We will be there for 10 days, so I will be an expert by the time I"m done. Can't help you out...
  20. mannabbe
    Kelly, My daughter is 7 - which is WAY different than 12 - I know! But I'm wondering if there's a ROCK group in your area, or at least some sort of support group that would enable you to connect her up with other celiac kids? If she isn't getting sick from small amounts of gluten, it will be so difficult to convince her that it's bad for her. Especially...
  21. mannabbe
    Hi Wendy, My daughter (age 7) and I have been gluten-free for 3 years. Our biggest news lately is that one of my daughter's classmates was diagnosed with celiac - two celiac kids in a class of 11! Celiac.com has just posted the summary of a new UK study that found celiac prevelance to be 1% in 7 year children in the UK. I know think that having celiac...
  22. mannabbe
    Hi Deb, I think that eventually all doctors will suggest to their patients that they go through an elimination diet after receiving a celiac diagnosis - as so many people develop secondary immunological responses when they are undiagnosed for years (a la the leaky gut syndrome). After my celiac diagnosis I actually got worse before I got better. It was...
  23. mannabbe
    Aimee, I've had a couple very different experiences with conferences. I do always call ahead and talk to the caterer or the hotel staff. There is always one person in charge of "special food" because of vegetarians, peanut allergy people, etc. Ironically, I received horrible (but safe) food at a large conference facility outside of Portland, Oregon...
  24. mannabbe
    Hi Tiffany, Like you, my "diagnosis" is just based on a positive IGG blood test. I had been gluten free for 4 months when the blood test was done, which is why the other tests may not have been positive. That was 3 years ago. For over a year I struggled with whether or not I had celiac. When I went to new doctors, however, I just told them I had celiac...
  25. mannabbe
    Shirley, it's hard to believe we are reaching our 3 year anniversary already! Like Shirely, I am still "in recovery." One year after going gluten free I felt better than I'd ever felt in my life (and I still do) - but I've problems with recurrent clostridium difficile infections (caused by antiobiotic use when I had pneumonia, before I was diagnosed with...
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