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

New To Gf Diet


Guest HannahCal

Recommended Posts

Guest HannahCal

I have only been on a gluten-free diet since Feb and would like some advise from people that have been on the diet longer. I was at the hospital overnight and the next day for testing. I had informed them that I follow a gluten free menu. I had done some homework so I sort of know what contains gluten.

Decaff Coffee

Corn Flakes (Kellogg's had told me that they have no gluten-free products)

Egg (scrambled looked like in might have some ham or something in it)

Cream of Wheat (was told that it was ok to eat because they cook it in water)

I did complain or at least voice my concern with this gluten free choices lol that I was given. The tech had given me a piece of fruit as I was going to leave because I was hungry. How would you have handled this situation?


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



Celiac.com Sponsor (A8-M):



Guest nini

A gluten-free friend of mine was recently in the hospital for an extended stay before her son was born, and she told me she had to lecture the nurses about what was involved in a gluten free menu. She couldn't believe that they tried to tell her that WHITE BREAD was gluten free and so was Cream Of Wheat!!! What is wrong with the level of education about this VERY important diet, that these nurses can be so nonchalant and uneducated about it.

Her husband had to take some gluten-free bread to her, and some other goodies, I brought her some stuff too, but after about a week of being there and continually getting delivered food trays with GLUTEN all over them, she told me that obviously they weren't interested in GETTING HER WELL, but in keeping her sick so that they could keep her in the hospital.

I think how I would have handled the situation is to educate them about gluten. Obviously Cream of Wheat is not Gluten free... Corn Flakes, yeah, well... that takes a little label reading, but if you already know it's not safe, tell them WHY.

I think maybe the celiac community needs to start an effort to educate hospital staff about the gluten-free menu... Get nutritionists involved, etc... start with your own local hospitals.

celiac3270 Collaborator

Fortunately, when I had to stay about 5 days at the hospital, it was Columbia Presybterian, also home to the largest celiac program in the US, so they knew what they were doing.

I got gluten-free bread, Jello, a kozy shack gelatin thing that had "GLUTEN FREE" on the label...uhh...a cup of hot water with a HerbOx....mix thing to put in it, also gluten-free.

Definitely complain, though.

KaitiUSA Enthusiast

I was told pretty much the same stuff. I explained to them why it was not and they really did not want to hear it. Whether they think we make celiac up or what I don't know but it seems like they aren't very afraid to gluten us. If they had someone with a severe life threatening wheat allergy I would like to see if they handle it the same way <_<

luvs2eat Collaborator

That's one of my greatest fears... that when I'm old, I'll end up in a nursing home and they'll feed me white bread (cause it's not whole wheat bread) and I'll have terrible diahrrea all the time and they'll get really mad at me and I'll get terrible bed sores.

My doctor laughed when I told her this. She said it'll be written all over my chart in such a case. But, we all know how that can go!!

Cream of wheat is okay cause it's cooked in water??? YIKES!!!

KaitiUSA Enthusiast

Yeah that is very scary to me in my mind to. Even if it would be on my chart you now how some people are..they might say its too inconvenient and feed me whatever...maybe by then it will be out there more and we won't have to worry about that....

Hello what do they think cream of WHEAT is??????

BamBam Community Regular

I was in the hospital recently also and my husband brought me almost every meal. I could eat breakfast fairly well, cream of rice, and hot tea and jello. But my lunch and supper were brought by my husband, I even asked for a credit on my hospitla bill and they laughed at me.

BAM


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

I don't think there is any reason to be quiet about this. I think you should be quite vocal. The hospital would be liable if they killed someone with a peanut allergy by telling him to eat his peanut soup after they had been informed, and this is no different. Once the hospital is informed, they have an obligation NOT TO HARM YOU!

Please do speak up, perhaps even writing a letter to the administrators of the hospital so they are aware of the problem.

pmrowley Newbie

I actually had to go to the ER about a month ago for some abdominal pain that wasn't going away (thinking appendicitis, yikes!) it ended up being nothing, but while I was there, they hooked me up to an IV. Of course, beforehand I had talked to the doctor, explained my conditions ("I have Celiac." "What, sprue?" "Errr, yeah." [never mind that "sprue" is an OLD term that is rather a misnomer these days....] "Oh yes, I know all about it...")

So, what do I see when they bring in the IV equipment? A bag of Dextrose. I mentioned to the tech that Dextrose IVs can be dangerous to people with my condition, depending on the makeup of the dextrose, and that it's not controlled. He raised his eyebrows at me, almost protested, then went out to check. About 15 minutes later, he came back with a saline bag.

Of course the question is, after I had talked to the doctor, why he sent the tech in with a dextrose drip? I thought he "knew all about it..."

Needless to say, that particular visit to the hospital ended up being a nightmare, due to several other issues, like drugging me to the gills with some narcotic, when I mentioned that I had pain of about a 2 on a scale of 10, and my poor wife sitting in the hospital with a completely incoherent husband. We've filed a formal complaint with the hospital and Blue Cross, we'll see what happens... But imagine if they had changed staff, and someone had hooked me up to a dextrose drip while I was incapacitated??

-Pat

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    5. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,080
    • Most Online (within 30 mins)
      7,748

    SheenaG1
    Newest Member
    SheenaG1
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.