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

Nutrionists?


TinkerbellSwt

Recommended Posts

TinkerbellSwt Collaborator

Dont know if this story belongs here, please feel free to move it

I just got discharged from the hospital. I have periocardisits. couldnt breathe all that sort of stuff, had to be on a low salt diet, as everyone on the cardiac floor is.. so the nutritionist comes in yesterday, yes the day before I am leaving to explain to me the low salt diet. OK, I said, but I havent been eating anyway and I understand low salt.. why havent I been eating? well over the weekend the kitchen said they cannot make me anything for a celiac. Well the look on the nutritionists face. I must have had three horns coming out of my head!! So I said gluten? I cant have it, at all, not a drop. Again, the three horned monster.. duh!! I know I shouldnt expect so much, but why wouldnt a nutritionist in a hospital know anything about my disease??? at all? makes no sense to me.

Now the eucharistic minister, very nice lady, comes in to offer me communion. I say, well I cant have the host, but I would like it if you can pray with me.. she says why, I tell her, pretty sweet,simple words, nothing techinical complicatied, nothing. So we say the prayer and she takes out a communion wafer, I think she is just going to use it for a blessing.. she breaks off a tiny corner and gives it to me.. I look at her like an idiot.. I said I cant, she said its just a little bit. NOOOOO, I cant have it at all.. made me feel a bit bad..

but anyway, thanks for letting me rant...


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



Celiac.com Sponsor (A8-M):



gfgypsyqueen Enthusiast

Yup ...hate hospitals!!!!! Unfortunately nutricionists are just like drs. Some are great and some are clueless. Sorry you had such a hard time in the hospital! Hope you feel better soon

little d Enthusiast

tinkerbellSwt

HI, I work at a hostpital, I had noticed one day that when I was filling in some info on a baby we call them cardx's for baby info to let the nurses no what the baby weighs, length, important info about mom as well. One day I noticed that a babies mom has Celiac disease. Cool I thought, I didn't want to run and talk with the babies mom, I just wanted to see if the Nutrionist knew what celiac disease was and asked what kind of food that she is giving the mom. She didn't know because the food was not infront the nutrionist or the menu. I gave her the benefit of the doubt, but she did say that they are about to go through some nutrition class and celiac disease was something on the agenda to learn about. And I have a coworker that is going thru Paramedic school and she said that they have learned about celiac disease.

Donna

TinkerbellSwt Collaborator

Thats great. I hope more and more become knowledgeable about Celiacs, its such an important dietary disease. Easily controlled, in most cases, by a gluten free diet. I would have loved to have a camera at that point had I been feeling better to show you guys the look on her face. I was a space man!!! LOL

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. - Rogol72 replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

    2. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    3. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

    5. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,911
    • Most Online (within 30 mins)
      7,748

    Cici123
    Newest Member
    Cici123
    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

    • Rogol72
      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.