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The Medical Community Are Clueless


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23 replies to this topic

#1 anewsprue

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Posted 07 May 2005 - 04:15 AM

I had a knee arthroscopy yesterday at the hospital's outpatient clinic. All went well, then as I was in the waking up process a nurse comes in with my chart in her hand that had a big red label on it stating GLUTEN INTOLERANCE. It was time for me to start drinking and eating, she says to me, would you like some toast, a bagel or muffin? In my drug induced state I still went ballistic on her, I said didn't you see the front of my chart......NO GLUTEN? Oh, she says I was going to ask you what that was!!!!!!!!!!!!!!!!!!!!!!!!! God Help Me! This was not a rookie, this woman was in her 40's and had been a nurse for a while.

I educated her and ordered jello and 7-UP, then (excuse the language here) I got the ever lovin hell outta there. I know she wouldn't have intentionally hurt me and apologized, but I can't emphasize it enough folks, be careful out there!

And, always have a family member or friend with you who knows your condition when you have a procedure done. My daughter-in-law was with me and would have stopped her from glutening me if I couldn't have.
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#2 celiac3270

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Posted 07 May 2005 - 05:46 AM

They are--some hospital nutritionists don't understand what gluten is... we always have to be alert about food ;)

I went to Columbia Presbyterian for my second biopsy and my operation, but they have the largest celiac program there, so they were very good about the diet both times.

At least you're okay! ;)
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#3 nikki-uk

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Posted 07 May 2005 - 06:44 AM

This is a problem here in the uk as well unfortunately.So disheartening,hospital should be the one place where you should get 'safe' food.Still,you now know what to do if you ever go into hosp again(take your own supplies)
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Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

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#4 mela14

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Posted 07 May 2005 - 11:48 AM

2 weeks ago I went to a new hospital for my monthly IGG infusions. I ususally spend about 4-5 hours doing the infusions and always bring my own snack. It's ususlly done in the drs office as he has the facility for it.
Well, I thought it was so nice of the nurses in the hospital to bring me a patient menu and ask what I wanted for breakfast and lunch. I told them I didn't want anything but a nurse came back with a muffin. I told her that I was gluten intolerant and refused it. she offered to get me some fruit which I thought was nice but I already had a banana with me. She then told me that my lunch would be a gluten free one as she called the nutritionist and requested one for me.
I thought that was soooooo nice. I didn't make it to lunch....they were late and i wasn't waiting around after my infusion. But....at my next infusion in 10 days I will make sure and double check everything even if they say it is gluten-free!!!!
You just have to always be on your guard. :rolleyes:
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Mel
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10 years of abdominal problems, incorrectly diagnosed with Endometriosis / suffered 7 surgeries. Total hysterectomy 2 years ago!
Fibromyalgia, Chronic Fatigue, Interstitial Cystitis ,IBS, Migraines, Primary Immune Deficiency to name a few. Finally realizing that food intolerances make them all worse!

#5 stef_the_kicking_cuty

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Posted 07 May 2005 - 08:31 PM

Still,you now know what to do if you ever go into hosp again(take your own supplies)

Oh, that's possible? Well, I know, in germany it would be. But my husband said, in an american hospital I can't take anything with me. And he bitched at me, I shouldn't be so defensive, they would know, what to do, blablabla... Can anybody tell me something positive here?
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August 20-27: Karate and Kickboxing World Championships in Germany (my homecountry)
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Shermans Dale, PA

#6 pixiegirl

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Posted 08 May 2005 - 02:40 AM

I think we all need to remember that until recently, in the USA, this was thought to be a rare disease. Now we know its much more common then previously thought, but.... there are still so many undiagnosed people out there. When the doctors and nurses were trained, they were told this was rare and that they will hardly ever see it and that is their mind set.

My ex husband is a RN at the hospital... he has further training as a Physican's assistant.. and he told me they never, not once, covered Celiac in school, he had no idea about gluten problems until I found out I was celiac.

It would be nice if our medical community knew every thing but the bottom line is they don't. And most of them learn a lot of stuff in school, when they are constantly exhausted, studying 5 different subjects and when they are told, "this is rare and you probably won't ever see it... it certainly gets filed away.

I'm not defending the medical community... I'm just trying to deal with it the way it is, I try to educate. When I found out I had Celiac, the internist I had then fought me tooth and nail, he insisted I do not have celiac, despite the only time my runs had stopped in over 11 years was on a gluten-free diet. I feel really lucky to have found a new doctor that went to medical school in Spain (she is spanish). She knows what celiac is and what the implications for it are.

But when it comes to our medical community we have to advocate for ourselves.

Susan
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#7 cdford

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Posted 08 May 2005 - 10:18 AM

I have the nurses double check every med for me after I explain how sensitive I am. I had a positive result at my last hospital visit...the nutritionist came and sat down in my room and discussed what I could and could not eat off the menu. They had to order meals from another local hospital, but they did it. They even made adjustments and sent extra on my plate for my daughter since none of the readily available items in the cafeteria were gluten-free. Things are getting better here.

Of special note: I carry a card or note with me at all times with emergency instructions for handling my children, caring for me in case of emergency medical requirements, emergency contacts, etc. It has saved me from real problems more than once.
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Donna
South Georgia
9 yrs gluten-free
...also DH, fibromyalgia, neuropathy, osteopenia, hypothyroid...

After almost 10 years, I am doing soooo much better!

#8 mela14

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Posted 08 May 2005 - 10:49 AM

donna,

what does the card or note say??? I think I would like to make one up for my wallet to...byt not sure how to word it.

thanks, :blink:
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Mel
mela14@optonline.net

10 years of abdominal problems, incorrectly diagnosed with Endometriosis / suffered 7 surgeries. Total hysterectomy 2 years ago!
Fibromyalgia, Chronic Fatigue, Interstitial Cystitis ,IBS, Migraines, Primary Immune Deficiency to name a few. Finally realizing that food intolerances make them all worse!

#9 SharonF

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Posted 09 May 2005 - 07:40 AM

I think a lot of people (myself included) want to believe that doctors and the medical community are all infallible, when of course they aren't--they are people, just like us.

Thanks for the reminder that we need to look out for ourselves. I wonder what I would have eaten, post-birthing my first baby after the cafeteria closed, had I known I was gluten intolerant then? (The only thing they could offer me was a ham sandwich.)
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Diagnosed celiac August 2004

#10 judy05

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Posted 09 May 2005 - 08:00 AM

In defense of nurses, I am an RN who just retired after #30+ years. The only time I heard of Celiac was in nursing school. They taught us that it was a very rare disease which occurred in children with distended belly and severe diarrhea. I agree that the medical doctors and nurses need more education. Most of my work was in the psychiatric field and we seldom had patients on special diets. Just because someone is a nurse you can't expect them to know everything. My advice is never assume that medical people know all that we know, be specific whenever you are admitted, be sure they understand what gluten free foods and medicines are. My own physician doesn't understand this disease. I tried to ask him to screen his patients, he said if any of his patients develop GI problems he automatically refers them to a GI doc. I tried to explain that Celiacs often have symptoms other than GI issues but he didn't seem interested. Needless to say I am looking for a new primary.
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The one resolution, which was in my mind long before it took the form of a resolution, is the key-note of my life. It is this,always to regard as mere impertinences of fate the handicaps which were placed on my life almost at the beginning. I resolved that they should not crush or dwarf my soul, but rather be made to blossom, like Aaron's rod, with flowers-Helen Keller



Judy- Gluten Intolerant

#11 gf4life

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Posted 09 May 2005 - 08:39 PM

But my husband said, in an american hospital I can't take anything with me.

I wonder what I would have eaten, post-birthing my first baby after the cafeteria closed, had I known I was gluten intolerant then? (The only thing they could offer me was a ham sandwich.)


I recently spent two days in the hospital having surgery and I was encouraged by my doctor and the nursing staff to bring my own gluten-free snacks/food supplements. I was so glad that I did, since when I came out of the anesthesia I was very sick to my stomach. By the time I stoped throwing up the cafeteria was closed. They keep frozen meals for the hungry patients after hours, but they are the left-overs from the cafeteria and therefor not labels with ingredients. The nurses and I did not feel comfortable with me eating this. I survived the night on rice protein bars, dried fruit , fruit leather and juice! The gluten-free meals that I received the next day from the cafeteria were better than the diabetic meal the lady in the next bed received, so I was very grateful. The kitchen staff were very knowledgable about the gluten-free diet and I did not get glutened while I was there. Not all of the nurses were aware of gluten (or gluten intolerance) but were willing to learn about it.
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

#12 luvs2eat

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Posted 10 May 2005 - 03:00 AM

Something similar happened to me in the short procedure unit. After a shoulder manipulation (for a frozen shoulder), I woke up in considerable pain. Before they could give me a pill for the pain, they insisted I have some food on my stomach. We started going thru their list, "No, I can't have toast, No I can't have crackers... or cereal... or a cookie." Just as I was about to start crying... my friend walked in and handed me a big fat Snickers bar!! Ha ha... It was the best thing I've ever tasted!!

Next time (hoping there is NO next time!!!) I'll be sure to bring my own snack!!
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#13 anewsprue

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Posted 10 May 2005 - 04:41 AM

Next time I have any medical procedures I am going to print off some info from the internet and take it with me. I forget others that don't have this disease don't have it on their minds 24/7 like I do. But...it's time they have a heads up and learn about it.
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#14 stef_the_kicking_cuty

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Posted 10 May 2005 - 05:28 AM

Well, if you have a surgery, then you know this couple of days before you go, right? So you could get some information. Or maybe inform the hospital staff about this. But what, if you have an accident? An imergency and you want your hubby or a relative to bring something in, because not in all hospitals they offer glutenfree meals...
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Stef

Next goals:
Results for 2011:
1x PA State Champ (I defended my title in pointfighting) and also again Grand Champion in pointfighting
August 20-27: Karate and Kickboxing World Championships in Germany (my homecountry)
gluten-free since 07/21/2004
Shermans Dale, PA

#15 Guest_gfinnebraska_*

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Posted 10 May 2005 - 05:33 AM

When I had surgery a year ago, the nursing staff was clueless as to what gluten was!!! They kept offering me soup, sandwich, crackers, etc. They thought I wasn't eating enough, and kept offering me ALL the wrong things. I had to stay on top of it... good thing I could! The problem is, the general public as a whole does not know what gluten is!! I did prior to celiac disease because I made all my own bread and knew the ingredients, etc. NOT very many people out there do. So, not to just pick on nurses and doctors... ignorance abounds in the public as a whole!!
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