Hospitals, meds, cards, IDs RE: Re: Celiac-induced Fantasy

[Guest guest]

My daughter has a medical ID we ordered from American Medical ID earlier this month. You put your own wording on it. I wish there were a standard -- glad to hear one is due out soon. I have not found any wallet cards which are worded well enough, but those can be made as well. (The only one I found was too weak - not urgent enough.)

We are new to all this, and are learning that meds in urgent situations are indeed a problem. My celiac daughter (who is not yet recovered and already had regular pain) came down with the stomach flu today and had pains so bad we brought her to urgent care. They were afraid to give her anything (such as an anti-nausea drug) because it might contain gluten. They didn't know whether these meds were GF! She remains in so much pain that she can't sleep. What if we ever have to have her admitted? Is it really the case that they might feed her gluten too?

I like the idea of writing to our hospitals and clinics. We donate money to LPCH every year, and this time I will be including a very strongly worded letter expressing my expectation that the hospital (and also our clinic) become a safe domain for celiacs ASAP. It would be difficult indeed to continue to donate to a hospital which cannot meet our family's own needs in an emergency.

From: [mailto: ] On Behalf Of Sent: Sunday, March 30, 2008 3:55 PM Cc: Subject: Re: [ ] Re: Celiac-induced Fantasy

I was thinking about that too Carol.

If we are wearing a medical

bracelet they'd maybe be more likely

to take it seriously?? Including meds

if we're in a situation where we have

no advocate.

On Mar 30, 2008, at 10:31 AM, "roobop2" <cwpowersmac> wrote:

Bea,I'd like to talk more about a celiac awareness at hospitals. Count me in. I work for a health system and would love to see how to make it a GF safe zone. Sounds like a full-time job. :-)What's to happen when there is a formal definition of gluten free, due out this year? Will it apply to medications? Does anyone know? Maybe once there is a definition then regulations could come that will require medications to be labeled.Does anyone wear a bracelet with celiac info on it? I don't even have anything in my wallet about being celiac. Time to change that. Carol>> Wow--I knew it! I am glad you survived the experience. Imagine what it would have been like if you hadn't been conscious!> I worked long ago as a nurse's aide and I saw what everyone ate and how it was prepared.> This has got to change somehow. Maybe there should be a group effort focused on alerting hospital emergency wards or something?> > Bea