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I had a full knee replacement 8 days ago which as you can imagine requires a fair number of meds for pain and what not. In a Kaiser Hospital everything is linked with their clinics so they know I'm celiac  and in fact diagnosed that 9 or so years ago. Still I had to make sure what they were giving me was   gluten-free. It turned out bot the lasic and a stool softener were packed with  wheat starch.  Kaiser received lasic (furosemide) from  4 manufacturers and only 1 is gluten free. The hospital pharmacist told me that they change all the time and that when I  refill  i have to make sure they are  gluten-free. They also said they urge patients to do the research on their own although i objected and told them its really their responsibility as doctors. They finally relented and found out what i needed to know. 

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thanks --persistence is really necessary. I found that some people  in the hospital  (RN & LPN) had no idea what celiac was, others  became advocates for me with the pharmacy and  doctors while some just stood on the sidelines. Most of our nurses in Honolulu  are from the Philippines and having just returned form there helped to develop good relations with them.  I have to consider teh  who thing as practice  when they do my 2nd  knee in 8 or so months. 

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One more reason why I hate doctors.  What's really scarey is what happens when one of us lands in the hospital in a condition that prevents us from being our own advocate?  In my case, I do not have any children or a spouse that I could rely on to advocate on my behalf... so basically I'm screwed.  :(

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One more reason why I hate doctors.  What's really scarey is what happens when one of us lands in the hospital in a condition that prevents us from being our own advocate?  In my case, I do not have any children or a spouse that I could rely on to advocate on my behalf... so basically I'm screwed.  :(

I carry a slip of paper with my medical conditions folded over half of my drivers license.  It begs to be read by anyone trying to find out who I am.  Problem solved  :)

 

Colleen

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I carry a slip of paper with my medical conditions folded over half of my drivers license.  It begs to be read by anyone trying to find out who I am.  Problem solved  :)

 

Colleen

 

I actually have a medical ID bracelet - but we're still relying on someone to read it, to know what Celiac and/or gluten is, and to give a rat's butt.  Call me cynical... but I don't trust anyone in a lab coat to hit the trifecta on that one...

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I also carry a full sheet folded up in my wallet, next to my DL where it sticks out a bit I put yellow highlighter on it and ***MEDICAL INFO**** so it is obvious.  That way if something happens and I am incapacitated they will find that.  I also tell everyone I know, if I get sick my info is in here.  It has all my many medications, conditions, past surgeries, emergency contacts, and my doctors.  Important things are highlighted, like the celiac, a drug allergy, and my immunodeficiency.  It is always a good idea to keep a list of your medications on you at all times, and it helps you not forget any when you to somewhere and they want to know.  I have them make a copy of my list and keep it to avoid transcription errors.  

 

I don't like wearing jewelry other than my wedding ring unless it is a special occasion, so alert jewelry would be something I would forget to wear all the time.  

 

I think it is important, like kenlove says, to try to develop a good relationship with a facility if you know you are going to be there again.  Write down names of people who were good and helped you, the pharmacist you talked to, that way you instantly have more leverage when you are throwing out names.

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It isn't enough to say "wheat, rye, barley and oats". I know I have mentioned before about when my Mom was in the hospital. They didn't know what celiac was so I told them she couldn't have those things. Her first meal came with a big old slice of white bread on top. I demanded to talk to the head of the kitchen staff. He said, "But it's white bread, not wheat bread!" I said, "it is still made from flour." He honestly didn't know where flour came from!

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sounds like the waiter at a thai place here. I tried to tell him no flour  so we took the flower off the table.

A few  years ago at the hospital here I tried to exlpain       a celiac vegan diet so the kitchen sent me a tuna on whole wheat..

they  just dont get it to even bother to try sometimes.

 

It isn't enough to say "wheat, rye, barley and oats". I know I have mentioned before about when my Mom was in the hospital. They didn't know what celiac was so I told them she couldn't have those things. Her first meal came with a big old slice of white bread on top. I demanded to talk to the head of the kitchen staff. He said, "But it's white bread, not wheat bread!" I said, "it is still made from flour." He honestly didn't know where flour came from!

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Everyone going into the hospital should: be armed with a device that can access the internet to check all meds and procedures (or access to a friend who does), confirm with your own eyes what is in your chart, talk to the dietician directly, bring in food if possible, and post a big sign stating your insurance and that if they do not accept it, to treat you only if you are coding! A big box of candy for the staff helps too!

This has helped me. I dread the day that I end up in a retirement home. It will probably be short as they will kill me with gluten!

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.... I dread the day that I end up in a retirement home. It will probably be short as they will kill me with gluten!

 

I have the same dread/fear!  If they don't kill me with gluten they'll kill me with the high-sugar food and "Ensure" type "adult nutrition" drinks.  Ever look at the ingredient list in that stuff?  Nasty!  And the crap they push through a stomach feeding tube is worse.  It really should be outlawed.

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