• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

New To Gf Diet
0

9 posts in this topic

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?

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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 <_<

0

Share this post


Link to post
Share on other sites

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!!!

0

Share this post


Link to post
Share on other sites
Ads by Google:


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??????

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,427
    • Total Posts
      930,503
  • Member Statistics

    • Total Members
      63,853
    • Most Online
      3,093

    Newest Member
    longtimeceliac
    Joined
  • Popular Now

  • Topics

  • Posts

    • Ditto. However, this is what I can never understand about gluten free food.  (see the bold bits which I've taken from the article) "We wanted to determine if gluten consumption will affect health in people with no apparent medical reasons to avoid gluten. Gluten-free foods often have less dietary fiber and other micronutrients, making them less nutritious and they also tend to cost more,” I wonder why  what so much of what I eat  that's gluten free doesn't have added vitamins - we of all people need fortification in our cereals and bread, surely?       
    • Yeah we learned that the hard way.  I am inclined to think (as I did initially) that it was JUST the Cheerios but as time is passing and she is not bouncing back I am worried that we need to strip away dairy again for a while.
    • Oh I have no issue with being dairy free personally but tell that to a 13 year old.  We both went gluten-free at the same time and it has been mindlessly easy for me.  But I am easy about food and no real food issues.  I am far more adaptable.  She comes to the table with her own unique set of issues that complicate just easily transitioning to dairy free versions of much loved favorites.  To most they are jst that "substitutes" to her they are completely different foods and ones that she has no interest in eating.  They don't satisfy her need for XYZ.  It is like craving an apple and someone handing you a fish.  For her anyway! LOL!
    • I believe the talk around this forum is that cheerios are not gluten free enough for people with celiac at this time. I don't know if anything has changed on that and when their lawyer calls me I'll quickly delete this. haha  
    • Could be we generally say get off of dairy for a few months when going gluten free. The part of the intestines that produce the enzymes, and help break down dairy are associated with the tips of the villi, which are the most damaged if not gone in celiacs. THIS is why most of us end up with a lactose intolerance early on. And most can introduce it later after healing. As to her symptoms with it there was a bunch of research about dairy permeated the gut and causing neurological issues in a autism study I was looking at years ago. And there have been other studies about damaged intestines and how the hormones in milk can easier effect ones body.   Personally I also have a huge grudge against dairy on a personal level as it is not natural to suck on a cows tits and drink the stuff, nor your dogs, nor a rabbits......I mean come on even Human Breast milk you would find odd to drink as an adult right? Back in the past dairy was a great way to get calories and fats when there was famine, etc around I mean it is meant to make a calf grow into a 500+lb cow. But on a genetic and hormonal level it is not really for human consumption and now days the whole corporate BS propaganda push and dairy farms shove that oh its healthy stuff down your throat. There are plenty of dairy free options for everything feel free to message me if you need help finding anything I have been dairy free for over a decade.
  • Upcoming Events