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:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      Related issues

    2. - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    3. - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

    4. - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,243
    • Most Online (within 30 mins)
      7,748

    Dorfor
    Newest Member
    Dorfor
    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

    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      This article may be helpful:  
×
×
  • 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.