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

Grrr-need A Deadly Gluten Shot For Hospital Staff


Ahorsesoul

Recommended Posts

Ahorsesoul Enthusiast

My dd (brain injured) was admitted to the hospital yesterday for some behavior problems. Nothing new and something she needs every now and then.

I knew before getting to this hospital, one we had not been to before, that her gluten-free diet was going to be a problem. So I told the admitting nurse it was really important that they monitor her diet. What a waste of time.

I was admitted once to a small town hospital two years ago. That hospital bent over backwards to ensure my tray was all gluten free. This larger hospital could care less.

Anyone have any suggestion on what I should include in my letter of complaint?


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



Celiac.com Sponsor (A8-M):



Lisa Mentor
My dd (brain injured) was admitted to the hospital yesterday for some behavior problems. Nothing new and something she needs every now and then.

I knew before getting to this hospital, one we had not been to before, that her gluten-free diet was going to be a problem. So I told the admitting nurse it was really important that they monitor her diet. What a waste of time.

I was admitted once to a small town hospital two years ago. That hospital bent over backwards to ensure my tray was all gluten free. This larger hospital could care less.

Anyone have any suggestion on what I should include in my letter of complaint?

This was posted recently:

Open Original Shared Link

Country Girl Newbie

My recommendation is to not blame the entire hospital if the failure was isolated to a single nurse. Give that nurses name in the complaint or the day and shift she worked so that she can be educated. I understand your frustration, but if when there are hundreds of employees it is more likely for the hospital system to educated one or two nurses as opposed to a whole hospital.

If the problem was throughout the hospital and over repeated days, I would ask the hospital to contact you for follow so you can ask them how they are going to prevent the issue in the future. Goodluck!

Jenny (AZ via TX) Enthusiast

I'm so sorry your dd had to go through that. She's lucky to have a great mom to look after her. It's stressful enough any time you have a loved one in the hospital without having to worry about her diet as well. I hope she gets to go home soon.

Roda Rising Star

Ask the nurses next time to get the dietician and the manager of the dietary department for you to speak with personally. This way the dietician is aware of your dietary needs and the manager can make sure the staff preparing the food is done correctly. I hope this helps. Since I was diagnosed there has been a lot more awareness in the hospital I work at. It is a small hospital and everyone knows everyone else. The night supervisor mentioned to me awhile back that they had a patient on the med-surg ward that was on a gluten free diet and she thought of me. The nurses on the floor asked the supervisor if peanut butter and crackers was allright for a snack. The supervisor said NO! and proceded to advise on alternatives. Not everyone is familure with the diet, but at least there are key people in the hospital that are. I attribute the heightened awareness because she knows me and we talk. I also bring food in on my shift so I know it is safe for me to eat, and I always make extra to share. I have opened a few eyes that gluten free eating/cooking is not boring!

mom.on.the.go Newbie

Is she still there? You may want to contact the Social Work office at the hospital to act as your advocate.

While I agree the hospital should be more responsible, ultimately she is your responsibility and you should also make sure she is being nurished, even if from home, while she is there.

Judyin Philly Enthusiast
This was posted recently:

Open Original Shared Link

thanks Lisa

I think we all should make a copy of this to keep on file.

appreciate the post.

Judy


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



Celiac.com Sponsor (A8-M):



irish daveyboy Community Regular

If you were in a really nasty mood !! :angry:

.

I would send the following.

.

To whom it may concern,

.

Regarding my daughter's dietary arrangements, which I went into in great detail.

The Hospital still gave her unsuitable food to eat.

.

I have enclosed the following for your staff to eat, as it would have the same effect on them

as giveng my daughter food which doesn't comply with her dietary restrictions.

.

I do hope you enjoy your snack. (this is all the more Ironic as it contains Wheat)

.

Roban

.

A very disgruntled mother.

.

Wouldn't you just love to do it !!! :rolleyes:

.

Best Regards,

David

Ahorsesoul Enthusiast

Just returned from the hospital. Arrived at 11:30 so we'd be there when they served lunch. When we came into the nurses station they were dussusing my dd diet. They thought it was a PKU diet. When her tray arrived that's exactly what she received.

I printed out the forms from GIG. Most excellent and exactly what I wanted. The nurses took them saying they would be sure to get them to all the departments. I've been a nurse since 1974. It's the weekend, they probably will disappear.

So on the way out of the hospital I asked to speak to the Hospital Supervisor. (I'd asked my dd nurse's to have her come up to the floor to talk to me but it wasn't done either) I asked her to make sure the forms got to their correct departments. We were standing at the main desk in ER. When we were finished the ER Unit Clerk there said I must work in a hospital. She knows how papers disappear too. lol

Thanks to everyone for the help.

In a hospital there is no excuse to not send the proper food for a diet. They have the resources either in a manual or at their fingertips on a computer. It would be the same with medication. If I don't know the medication I look it up before I give it to my patient's.

Daveyboy, I am thinking up a recipe for a thank you for the staff. Mississippi Mud Cake would sure hide a lot of laxative.

Ahorsesoul Enthusiast

Just received a call from the hospital ,the nurses were told by pharmacy that they will not release any medicine to my dd. They flat out refuse to call to find out if their generic meds are gluten free. I do understand that it is the weekend and they probably can't get a hold of a real live person at this time. Of course if it was a life or death situation I'm sure there is a way to contact someone. At least I'd hope so.

Now this is the sad part. The nurse requested me to bring my dd medicines to the hospital. I already did this when she was admitted. The hospital has those meds somewhere and didn't even know it.

I just talked to the hospital supervisor. She thinks since dd has already been taking the meds it certainly shouldn't be a problem. She's going to call me back.

Those forms really do make people stand up and take notice.

I think I should make a short appointment with the Hospital Administrator tomorrow. As a nurse I think Hospitals should be able to handle such situations.

Roda Rising Star

While I can sympathize with everyone's frustration, I too agree with mom.on.the.go. Maybe you can take this experience and turn it into something constructive... increasing awareness. I was curious one day and went up to our cafeteria and asked one of the dietary employees if they were able to accomidate patients and visitors with gluten free diets. She was very famliar with it and even said that they have a lady that is gluten free that comes to eat in the cafeteria just because she likes the food. She usually lets them know ahead of time she is coming. I am sorry that things have slipped thru the cracks for you. Unfortunatley, as you know, this does happen, but it does not make it accecptable. Not all hospitals, nurses, and other staff are like this, and in my opinion, these negative attitudes fuel hostility toward healthcare employees in general. There are a lot of us good ones out there. Mind you, I am not in nursing (I'm an x-ray/ct tech), but I am aware of other areas, and have taken this opportunity that has been given me to help educate and heighten awareness with my coworkers.

Ahorsesoul Enthusiast

This morning dd Dr called from the hospital. He said since I was so pro-active with her care and since the hospital could not ensure her diet to be gluten free they wanted to send her home. Mind you they have not done any type of treatment for her.

So I asked if my dd being on a special diet meant that they were refusing to provide treatment. Now she will be staying a few more days. She will see a neuro doctor to see if a change in her seizure meds is needed. Which is proabably what she needs.

I doubt she will have much done for her. I think what makes me mad is they will not even try. She has been at three other hospitals in the past. All of them were willing to do their best at providing a gluten free diet.

The hospital she is at right now is a regional hospital so they have the resources to provide a special diet.

I will never use those forms again. But I will make sure the next gluten free person who goes to Scared Heart Hospital in Eau Claire, WI will be provided with a gluten free diet. As a nurse I know this hospital will not accept my dd into the hospital again.

Roda Rising Star

I am so sorry you must be really frustrated by now. It sounds like the organization as a whole has really dropped the bomb. This is so not acceptable. I am certain that there are some good people there, but it sounds like they(the instution) has something to "prove" and unfortunately it has not been in your daughter's best intrest. Is it possible that if she needs inpatient care to go back to one of the other hospitals that worked with you? I would not go back either with this much bad experience. If it had been an isolated problem and then they tried to make it right I would consider a second chance, but in my opion, too much has NOT been done and I would be done too! Keep us posted and let us know how she does!

digmom1014 Enthusiast
This was posted recently:

Open Original Shared Link

Momma Goose-you are the coolest!

I was just worrying about being in the hospital and being glutened.

Ahorsesoul Enthusiast

It keeps getting better. Had a meeting with the doctor. I'm happy with the outcome. The doctor was not happy when the nurse came in to tell us some how my dd seizure medication had been over looked and not given since Saturday.

I think the doctor was really glad the person I had with me was not a lawyer but he didn't like it that I a witness to this statment.

I'm beginning to feel very sorry for the other patients on this unit. If their loved ones do not have any medical knowledge there is no telling what is happening to their loved ones. I've also heard from other people in the medical field that this unit likes to move their patients out very fast and often they are not given the help they need.

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

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

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

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    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

    • 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.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.