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

My Hospital Experience


lonewolf

Recommended Posts

lonewolf Collaborator

I had day surgery on Tuesday and made sure (thanks to Debmidge) to tell them that I needed everything to be wheat/gluten free in the recovery room. (The anasthesiologist was great about all my allergies/sensitivities and chose appropriate medication.)

The two main nurses I talked to were a little clueless about food though. When I explained my dietary restrictions, the first nurse said, "Oh, don't worry. We don't have wheat crackers in recovery - we'll just give you saltines." When I explained that saltines were made of wheat she looked at me with a shocked look and said, "REALLY?" I told her about wheat flour and how bleaching it made it white and she said that she "never knew that!"

The nurse in the recovery room was very sweet too. She told me that she knew I couldn't have wheat or dairy, so she brought me chocolate pudding. I said, "Wow! You have dairy-free pudding?" She said, "Oh, I don't know, let me look." Sure enough there was skim milk in the pudding. She was surprised that it had milk in it.

My sister-in-law, who is a pediatric nurse, said that it was "embarrassing" that a nurse wouldn't know what was in a saltine cracker or a pudding cup.

I know that there was a recent thread about hospitals, but just wanted to remind people to NOT trust that the nursing staff has any knowledge of special diets.


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



Celiac.com Sponsor (A8-M):



GFBetsy Rookie

Another thing to be aware of (especially if you've got DH) is that sometimes the "glue" they use to close incisions can have wheat in it. My cousin called to check up (after her entire abdomen broke out with a crazy rash) and she said the Dr. checked on the glue and said it had wheat in it :blink: . And that was AFTER she told him repeatedly that she had celiac. So my advice is to get your doctor to check on the darn stuff long before you go into surgery (and then remind him that he/she needs to use the gluten-free glue to close you back up) (or else just do it the old fashioned way with stitches).

Doctors (and nurses) deal with a lot of issues at one time, and they aren't as aware of this disease as we are, simply because we are dealing with it daily and they aren't. So just make a nice long list of all your qustions / needs, tell all the staff, and just sigh when a nurse (who has at least 2 years of college) doesn't know that white flour comes from wheat! :rolleyes:

Guest Robbin
:blink: Good grief, these nurses not only don't know anything about special diets, they obviously don't know anything about food period. What an educated healthcare system we have, wow. :blink:
Ursa Major Collaborator

I sure hope that I won't have to spend any more time in a hospital EVER again. I'd be toast with all my intolerances (and not gluten-free toast, either :P;) ). They'd kill me if nothing else would.

debmidge Rising Star

A person shouldn't be allowed into adulthood unless they know where food comes from. Like sugar comes from sugar cane, white flour is wheat, vanilla is from an ochid bean, ham is from a pig, most carbs are found in food that grows from ground (vegetation) except for milk which is high in carbs; shortening is vegetable fat, butter comes from cream, cream is milk, yogurt comes from milk, ice cream is dairy, geesh I could go on!

It seems that there's a basic "disconnect" with our education system both in a school setting and at home (a lot of food info I know is from my mother teaching me to cook). People should know more about the foods they consume before they leave high school. This is rudimentary education.

No wonder people have no clue to eat healthy (unless they are celiac, then they KNOW the basics). Obviously these nurses do not read labels in their personal lives at all.

momandgirls Enthusiast

The fact that people do not realize that pudding is dairy or that saltines have wheat seems ridiculous, I agree. I have run into this over and over again with all sorts of people. People do not realize what ingredients go into food. Most people just don't think about it and, if my family and I didn't have food issues, I'm not sure I'd think about it very much either. Nursing is an extremely hard job and nutrition and special diets are not generally taught in nursing school. Should it be? Maybe... Hospitals would not run without good nurses. Personally, I only had a vague idea of what Celiac Disease was until my daughter was diagnosed (and now I feel like an expert!) though I have always known that saltines are made from wheat and that pudding is made from dairy. I don't feel like I know it, however, because my daughter has Celiac or because I'm a nurse...I know it because I cook and I'm interested in health and because I happen to look at food labels. I understand your frustration but please do not blame the nurses - hospital nursing really is one of the hardest jobs out there and I'm sorry that you had such a frustrating experience. I've seen it said over and over again on this board, you have to be your own advocate. Unfortunate, maybe, but it's true... If you happen to be in that situation again, the best thing to do is to make sure that you ask lots of questions and make sure that everyone knows what your intolerances are.

eKatherine Apprentice

I don't know if commercial pudding has wheat in it, but most of the recipes I made at home in the past called for wheat flour.


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



Celiac.com Sponsor (A8-M):



Saz Explorer

One thing I reccomend you do if you know that you have to go to hospital is tell in advance.

I had to have an operation at the end of 2004. It was on the Monday and on the Tuesday morning when I could eat I was told "Sorry it will take 24 hours to organise a meal for you" Lucky I am not super sensitive and wasn't up toeating much so I was able to eat a sandwich from the canteen. The next thing that annoyed me, The lunch and dinner meals when I did get them were meat and veg, now this is fine but not when thats all you get. I did get some quiche on the last day though. Also the apperentely didn't give salad, so imangine my annoyance a month later when I went back for a check up and young boy in the bed opposite had celiac and had salad with his meal. :angry:

What shocked me most was this hospital was one of the major ones in my state and It seems to be something that realated to only this hospital as last year I had go to Emergency at a far smaller hospital and got a friendly meal in about 20 mins. *sorry for the rant*

Michi8 Contributor

Last I was in the hospital was for a cesarean in January 2000. At the time, the only food issues I knew I had to worry about were peanut allergy and lactose intolerance. Well, the lactose intolerance got marked on my alert sheet so the kitchen was aware of it. Because of that, the only food they were sending was jello. Apparently they were unable to make me any foods without dairy! I told them I could take Lactaid with the food, but they would not prepare any other foods for me, because I wasn't "allowed" to self-administer my Lactaid. :angry:

Michelle

Nancym Enthusiast

I've had similar conversations with food workers. They didn't know what wheat was. Man, our school system is terrible.

How do you get out of high school with that lack of fundamental understanding? Good grief!

aaascr Apprentice

The food industry has the general

population right where they want it:

Eating processed foods so that cooking

is minimal; and ignorant of the ingredients,

just as long as it tastes good...

Unless of course there is a medically

dietary issue at hand.. but even with

that they summarize the carbs, sodium,

etc - so who really looks (except people

like us)?

lonewolf Collaborator
I understand your frustration but please do not blame the nurses - hospital nursing really is one of the hardest jobs out there and I'm sorry that you had such a frustrating experience. I've seen it said over and over again on this board, you have to be your own advocate. Unfortunate, maybe, but it's true... If you happen to be in that situation again, the best thing to do is to make sure that you ask lots of questions and make sure that everyone knows what your intolerances are.

Like I said, the nurses were very nice and helpful. They did their jobs well. But I still think that it is inexcusable for someone to go to college to become a nurse and NOT know that saltine crackers are made with wheat flour or that pudding contains milk. I took nutrition alongside all the nursing students when I was in college. We learned things like that. If I can remember it, then why can't they? I was my own advocate. I had a red wrist band that said "No wheat, gluten, dairy, eggs or soy" and I had it written on every chart and told everyone that asked any questions. I never expected them to know what Celiac was, so I didn't even mention it - I was clear about wheat flour and milk especially. My sister-in-law is a nurse in a busy hospital and, as I said before, was embarrassed that anyone in the nursing profession wouldn't know something that simple.

My point in this post was to warn people (again) that hospital staffs can't be trusted to know anything about nutrition. I was very polite to the nurses and they listened to me with respect and seemed to appreciate the "new" information. I tried to use the opportunities with the two nurses as "teaching moments", since the teacher in me can't help but come out, even when I'm on morphine and codeine.

2Boys4Me Enthusiast
A person shouldn't be allowed into adulthood unless they know where food comes from. Like sugar comes from sugar cane, white flour is wheat, vanilla is from an ochid bean, ham is from a pig, most carbs are found in food that grows from ground (vegetation) except for milk which is high in carbs; shortening is vegetable fat, butter comes from cream, cream is milk, yogurt comes from milk, ice cream is dairy, geesh I could go on!

The first thing I thought was: No it doesn't! Sugar comes from sugar beets. Same result...different plants. All sugar beets in Canada are grown in southern Alberta. It's too cold here to grow sugar cane.

Generic Apprentice

I know the feeling, I had a surgery July 05. The nurse who checked me in also had celiac. So as a precaution she put the no gluten /wheat allergy band on me. In the recovery room another nurse tried to force me to eat saltines! I was trying to explain I couldn't eat it (was still heavilly sedated). Luckily about that time the nurse who had celiac intreviened. The other nurse hadn't even checked my band!

Serously! I find it unacceptable to not know that wheat is flour, etc. What do you think it is made of AIR? I knew when I was 4 years old!

debmidge Rising Star
Last I was in the hospital was for a cesarean in January 2000. At the time, the only food issues I knew I had to worry about were peanut allergy and lactose intolerance. Well, the lactose intolerance got marked on my alert sheet so the kitchen was aware of it. Because of that, the only food they were sending was jello. Apparently they were unable to make me any foods without dairy! I told them I could take Lactaid with the food, but they would not prepare any other foods for me, because I wasn't "allowed" to self-administer my Lactaid. :angry:

Michelle

sometimes it's best not to mention the Lactose intolerance then.....like Lactaid is a "controlled substance"! :lol:

During my last operation I brought in Lactaid, Gas pills, motrin, asthma meds, - I hid them in my pocketbook as I knew the "drill." The lactaid and gas pills came in very handy 'cause if I had to wait for the overworked nursing staff to bring them to me , well it would be hours at least. They don't have to wait on me hand and foot.

The first thing I thought was: No it doesn't! Sugar comes from sugar beets. Same result...different plants. All sugar beets in Canada are grown in southern Alberta. It's too cold here to grow sugar cane.

Ok, sugar beets (I was looking for the most popular source and I didn't want to confuse any novices that sugar can come from a beet plant) but you get it.

- - - - - - - - - - - - -

Also, when you make pudding at home, even boxed pudding, you put milk into it. I knew that from when I was a kid and instant pudding was introduced. We drove our mother crazy with it. It was so easy to make and she gave up and let us make it ourselves.

It's frightening to think that adult people of normal intelligence do not know where the food ingredients come from.

Saz Explorer

The chocolate pudding story is awful! Even if you make it from scratch most recipies generally call for milk! Then there the issue that puddings/ cakes contain flour! It is like the major dry ingredient!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748

    Tara M
    Newest Member
    Tara M
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
×
×
  • 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.