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Celiac/Coeliac Wheat/Gluten-Free List <[log in to unmask]>
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Nancy Uding <[log in to unmask]>
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Tue, 7 Oct 2008 19:15:59 -0500
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<<Disclaimer: Verify this information before applying it to your situation.>>

Hello all,
I want to thank everyone so much who responded to my post regarding my 15 year old daughter's upcoming surgery and hospital stay.  My daughter has celiac, and come next February, we'll be celebrating her 10th anniversary being gluten free!

First of all, thanks so very much to everyone for all of their warm wishes and kind support for Carmen and our family.  It's going to be a tough haul, and knowing there are so many people out there pulling for us makes a huge difference!

And, to summarize the posts;
Overall, everyone said that I should talk to a dietician at the hospital, and I should be very proactive about letting staff know the scoop.  But, at the same time, I need to be prepared for kitchen staff to make mistakes!  I need to make sure I see everything Carmen will ingest, and I need to bring ample safe food alternatives, because even with the best intentions, mistakes are very common.  There were only 2 posts out of about 30 that said they did not have any problems getting the hospital to provide safe food.  2 people that posted said they had kids at Children's in Seattle (where we will be), and though Children's was very helpful, mistakes were still made.

A couple people said that after surgery, it will probably be a few days before my daughter will actually want to eat, so there won't really be that many meals to worry about with the length of our stay.

A couple people said I need to be very on the ball with what happens in recovery - often hospital staff will give patients saltines and other stomach settling foods - just as the patient is getting out of surgery - and before people like moms have a chance to be with the patient.  In other words, I won't be there for a while right after surgery to intercept any saltines.  (Any other moms out there ever have to do the flying leap across the room to keep someone from sticking some gluten in their kids' mouth? - not just after surgery, but after school, during play dates, st birthday parties, etc., etc....)

It was also suggested to me to get a list of gluten free meds, and be sure to talk to the staff about potential issues with any emergency treatments.

One person who posted has started a company to provide kits to hospital kitchens to make single serving gluten free breads.  These kits are available to individuals as well.  I hate to say this, but shortly after I started getting replies to my post, my computer crashed and I lost a lot of the posts!!  So.. if you're out there, can you please contact me again or post info about your service to the list serv? Thanks!

A couple people said that this is an excellent opportunity to educate hospital staff about gluten free diets.  You're right!!  Just wish I didn't have to keep educating people!!!

One person suggested getting in touch with GIG for helpful info on hospital stays.  I'm sure most of you have their info. - www.gluten.net.

One person suggested posting signs and warnings in our hospital room - good suggestion - think I'll put a nice big sign on the door, one on her tray table, and one on her chart - and stick a copy of a list of gluten free meds on the chart, too.

That's pretty much it!
Thanks again to everyone!
Nancy (and Carmen)

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