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Thread: As if life with SCI weren't hectic enough ... lol!

  1. #1
    Senior Member zillazangel's Avatar
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    Cool As if life with SCI weren't hectic enough ... lol!

    Throw in celiac disease too! As it turns out, I was diagnosed with celiac disease a few months ago and yowsa, it sure has complicated our lives. Celiac is a genetic, autoimmune disorder that is more or less an allergy to gluten, which is the base in wheat, rye and barley. I can't eat, or even touch, anything with gluten. Things like what you first expect: bread, pasta, etc. But the list is astonishly long - with rare exceptions (and I do mean rare, I've never seen one) every canned, prepared soup on the market has wheat flour in it for example. Tocerpherol - which is vitamin E - can be manufactured from wheat, so I have to be leery of all body/bath products unless I scrupulously check with the manufacturer, who usually doesn't know the source themselves (at least not the first 10 reps on the phone!).

    Basically, I can eat from a list of "safe" foods now instead of not eating off a list of "banned" foods. See www.celiac.com for more info about celiac. This of course means I cannot eat in a restaurant anymore - with the bizarre exception of Bonefish Grill, PF Changs and Outback, all of which have gluten free menus. However, as a celiac that has now been eating gluten free for several months, I am very VERY sensitive to gluten and I have gotten sick at all of these restaurants from cross contamination, so I don't eat out at all anymore.

    So, now we joke that one of us can't walk and one of us can't eat!!!! My son was tested for celiac and although he doesn't not have the disease now, he has a positive genetic profile for it, so he may develop it later (however, many, many people have a positive genetic mutation for it and never develop it, so there is hope for him that he won't, but he is at MUCH higher risk with a mommy with celiac; instead of 1:133 odds, he has a 1:22 risk).

    I came to post tonight because I am exhausted from a mass cooking effort tonight - I made 2 GIANT pots of (gluten free of course!) soup to freeze and eat later. My condition requires that I cook from scratch every day and from raw ingredients - no processed foods. Very healthy, but very time consuming!! So I've been taking weekends and holidays to try and freeze stuff to have things to toss in the microwave when I'm busy during the week to take the place of the old days when I'd just run out for take out.

    Also, this actually does have to do with SCI somewhat - we made our whole household gluten free and it affected our PCA; we "require" that he not eat gluten in the house. I tried letting him store/keep gluten items (e.g. a loaf of bread) in one area of the kitchen and make him scrupulously clean up after himself (and he did, he is ex-military!!), but no matter what we did, I ended up sick from the crumbs via cross-contamination. After we "banned" (I say ban in quotes because it was a mutual discussion, not a dictate), gluten from the entire household, him included (he saw how HORRIBLY sick I would get), I finally, finally, finally got well and even he said it's been worth it. I do nice things for him like buy Panera Bread gift cards now and then so he can get his gluten fix there, lol!

    It's been a HUGE change and a sacrifice for everyone, but it's been worth it for my health. Anyway, there's my huge long post for the day. Love the new format.

    Ami
    Wife of Chad (C4/5 since 1988), mom of a great teenager

  2. #2
    I have some experience with Celiacs....here is one useful tip I learned along the way. Snickers bars are unacceptable because they flour the pans that they are made on..however...the tiny bite sized snickers ....are ok because they do not require flour on the pans. My friend raised a daughter with Celiacs...the things we had to find out...! Also, you can have cakes and breads made of rice flour I believe. There are some good mixes out there that you can have , as well as bread products in the health food stores. You can order pizza too...lots of options out there now...oh and I remember caramel coloring was a no no too.
    Mary

  3. #3
    Senior Member zillazangel's Avatar
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    Wow!

    I can have baby snickers??!?!!?!?!?!?!?!?!? I'll confirm this, but if it's true, I will be forever in your debt for this tidbit (literally, lol!) of information. *** love *** ** happiness ** I so miss candy!!!!!!!!!!!!!!!

    Ami (who has lost 20 pounds since being diagnosed, not intentionally!!! just by eating a severely restricted diet and by eating healthier!!!)
    Wife of Chad (C4/5 since 1988), mom of a great teenager

  4. #4

    Thumbs up

    Ami, you have probably heard of this magazine, but in case you haven't:

    http://www.livingwithout.com/

    Also, a book called "What to eat when you can't eat anything"... LOL, great title. Not sure of the publisher.

    Good luck to you.
    "Who are all these strange ghosts rooted to the silly little adventure of earth with me?"--Jack Kerouac

  5. #5
    Senior Member zillazangel's Avatar
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    Thanks!

    I just found this magazine at Whole Foods a few weeks ago, it is AWESOME! I signed up for the 3 year subscription ... I laughed because I wanted a lifetime option! Thanks for the tip though, I need all the help I can get. How've you been, I never get over to NM anymore.
    Wife of Chad (C4/5 since 1988), mom of a great teenager

  6. #6
    I just found this magazine at Whole Foods a few weeks ago, it is AWESOME! I signed up for the 3 year subscription ... I laughed because I wanted a lifetime option! Thanks for the tip though, I need all the help I can get. How've you been, I never get over to NM anymore.
    I don't get over there, either!

    I was remarried to my ex in early April, and I am happy as the proverbial clam... she was all I ever needed. We are doing great.

    "A second marriage is the triumph of hope over experience." --Samuel Johnson

    I just saw your wedding picture, too, and congratulations!

  7. #7
    Ami,
    The biggest lesson I learned about managing Celiacs is that you have to be aggressive to find out what you can eat and what you can't eat. My advice to you is to keep your diet list in hand and sit down with the packaging of foods that seem ok to you, and call them up. Ask them about any gluten based additives that might trip you up. You need to be aware that produce is sprayed with a gluten based substance to keep it fresh, and you need to avoid that junk on your fruit..etc. This is a time for mastering the diet and seeking out information that will help you normalize your situation. Please read the ingredients on the bag of bite sized Snickers and call the number on the bag...usually there is an 1-800 # and you can start finding out for yourself.

    Keep it up...its not easy...Mary

  8. #8
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    celiac...

    My son was on the celiac diet for a number of years with great results. It is now much easier to find gluten free products even in wal-mart - including pastas and bread items. Learning to cook gluten free takes a little bit of time, but after the initial learning curve, it is not much more difficult than regular. It was much easier to make most stuff from scratch so that I did not have to cook separate food - we all ate gluten free at home -it was fine.

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