Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Hospital Meds


kenlove

Recommended Posts

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. 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

    2. - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

    3. - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

    4. - Scott Adams replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,912
    • Most Online (within 30 mins)
      7,748

    journaljenny
    Newest Member
    journaljenny
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • xxnonamexx
      very interesting thanks for the info  
    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.