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Hospital Meds


kenlove

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kenlove Rising Star

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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GFinDC Veteran

Good for you Ken!

LauraTX Rising Star

A good example of how a little persistence can pay off :)  It is worth it for your health!

frieze Community Regular

and typical of what I have heard of the ins plan....

kenlove Rising Star

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. 

NoGlutenCooties Contributor

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.  :(

GF Lover Rising Star

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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NoGlutenCooties Contributor

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...

LauraTX Rising Star

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.

bartfull Rising Star

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!

kenlove Rising Star

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!

cyclinglady Grand Master

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!

NoGlutenCooties Contributor

.... 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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    • trents
      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
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      The reason that it triggers your dermatitis herpetiformis but not your celiac disease is because you aren't completely intolerant to gluten. The celiac and dermatitis herpetiformis genes are both on the same chronometer. Dermatitis herpetoformus reacts to gluten even if there's a small amount of cross contamination while celiac gene may be able to tolerate a some gluten or cross contamination. It just depends on the sensitivity of the gene. 
    • trents
      @Mynx, you say, "The reason this is believed is because the gluten protein molecule is too big to pass through the distillation process. Unfortunately, the liquid ie vinegar is cross contaminated because the gluten protein had been in the liquid prior to distillation process." I guess I misunderstand what you are trying to say but the statements in those two sentences seem to contradict one another.
    • Mynx
      It isn't a conjecture. I have gotten glitened from having some distilled white vinegar as a test. When I talked to some of my scientists friends, they confirmed that for a mall percentage of people, distilled white vinegar is a problem. The cross contamination isn't from wheat glue in a cask. While yhe gluten protein is too large to pass through the distillation process, after the distillation process, the vinegar is still cross contaminated. Please don't dismiss or disregard the small group of people who are 100^ gluten intolerant by saying things are conjecture. Just because you haven't done thr research or aren't as sensitive to gluten doesn't mean that everyone is like you. 
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