Help! Hospital Food

[cdfiance]

I had to bring Alex (my fiance) into the ER last night because her fever skyrocketed and she started having some blood in her phlegm and was just generally stuggling quite a bit to breathe. She was admitted and is on an O2 mask and getting IV fluids and antibiotics. They said her chest X-ray looked like bronchiopneumonia (sp?) and her asthma is also complicating matters.

I told practically everyone invloved in her care that she has Celiac, which means no gluten. But this morning she was brought toast as part of her breakfast! She wasn't up to eating anything anyway but I don't even want gluten in the same room as her, especially when she is already sick. I told the person bringing the meal that she absolutely cannot have anything with gluten and she said she would write that down. I then told Alex's nurse about it and she would take care of it but it might her meals might not be okay for the rest of the day. So I said not to give her any meals for the rest of the day and I just brough her some soup from home for lunch.

I'm really worried that she'll get a gluten meal anyway or that there is no way to avoid cross contamination. She's in no condition to protect herself from gluten right now and I can't be with her at certain times to make sure. Visting hours start again at 5:00 but then I have to leave her again at 9:00. I don't know what to do. I'm hoping her hospital stay won't be too long. Her GP should be in to see her tomorrow morning and she has been a great advocate for Alex this whole time so I'm hoping she can help us with this.

I'm so frustrated and worried!

Ryan

[Lisa]

Ryan,

I am so sorry that Alex is having such a hard time. It sounds like the hospital is the place she needs to be.

Bringing something from home, like the soup, is a good idea. Could be be there during meal time to make sure every thing is fine?

Alex is very lucky to have someone as devoted as you. I hope the improves soon.

[blueeyedmanda]

Ryan

I am sorry to hear Alex is in the hospital. I would keep bringing her food from home. Is there a way you can see that a special dietitary notice goes to the kitchen? I know that is how it works at my hospital. I see we accomodate all diets here.

Hope she is feeling better soon.

[Mango04]

Sorry . I've unfortunately never heard of a hospital accomodating a gluten-free diet. If you can, just tell them they are absolutely not allowed to feed her and bring all of her meals from home. Maybe you can give the hospital staff safe foods to give her for times when you're not there.

[jerseyangel]

In January, I was in the hospital for 2 nights following surgery.

I just told them I would be supplying all of my own food (my husband brought it up to me). When I explained about the Celiac, food intolerances, and cross contamination, the nurses agreed that this would be much safer.

They showed my husband where a microwave was on my floor, and were very understanding about everything.

On the last day, the hospital dietition came in--we talked a while, and I ended up giving her ideas for her nutrition classes regarding the gluten-free diet. It was amazing all the little things they don't know about the diet--especially cross contamination.

I would not trust the hospital to feed her safely.

I hope she's feeling better soon.

[jennyj]

I sell gluten free foods in our store and I called our local hospital and talked with the dietician and asked her what they did for a person with a gluten intolerance if they had to stay at the hospital. I told her I was there recently for an IV iron infusion and did not eat because the staff was not sure what to send me. I told her that if they needed foods to call me and I would bring them to the hospital for a patient. She didn't know that there was a place to buy the foods only 15 minutes away. She said they tried to accomodate people. I also mentioned cross contamination to her. You may try talking to someone directly. I don't know if it will help but at least it can help make more people aware. It's kind of scary that a hospital doesn't know.

[chrissy]

ryan, my daughter spent 2 1/2 months in the hospital last summer with an eating disorder. the dietician assured me that the hospital had celiac children in there on a regular basis and that they knew what they were doing. she told me that the kitchen staff knew all about how to prevent cross contamination. my daughter went into the hospital with her Ttg levels almost normal, and when she cam home her Ttg levels were over 100. so much for the hospital knowing what they were doing. i think that the dietician held a special meeting with the kitchen staff after my daughter's hospital stay.

[Phyllis28]

I would provide all her own food since you are not sure the staff can is properly trained to provide a gluten free diet.

After this emergency hospitalization is over you might want to contact the hospital to determine if the hospital can provide a gluten free diet. Hopefully Alex won't need to be in the hospital again, but being prepared will be one less stress.

Hope Alex gets well soon.

[Guest cassidy]

I'm pregnant and I asked the question about hospital food a while ago. I came to the conclusion that I'm going to need to bring my own food. I have frozen meals in meal-sized portions and I'm going to bring a cooler and ask my husband to heat things up. I realize I have had time to plan ahead, but I think bringing food from home is the way to go as well. Could you get a bunch of things like boost and granola bars and leave them with her? She probably doesn't have much of an appetite, so anything nutritious might work.

Hope she feels better and comes home soon.

[gfp]

This might sound extreme but ....

Firstly put it in writing....

Secondly insist on a celiac panel... it seems a good idea anyway to rule out the fever being from gluten.... but if not you can have a before and after...

Secondly, buy some sample bags (little ziplocks or something) and tell the hospital all the food they provide will be tested if the celaic panel at the end of the stay comes back elevated. Depending on the length of stay you might need to freeze the bags.

Tell them, if they can't guarantee and cope then you will provide the food in sealed containers to be reheated for her.

Do not trust the hospital, I know of one person who went in for testing got glutened and their immune system went crazy... and to cut a long story short contracted viral menengites whilst her immune system was compromised.

[cdfiance]

Thanks everyone for your responses. I don

[CarlaB]

I'm glad things are going a little more smoothly today.

I always like toast when I'm feeling stomach upset ... even the gluten-free toast is good then.

What about cookies? Not healthy, but they're softer than rice crackers.

Applesauce is a good idea. Bananas? Yogurt? Hot cereal?

[Susanna]

Ryan--so sorry you and your daughter are going through this. I'm celiac, as is my 11year old son. Also, I'm a 20+ year nurse in an acute hospital, and I agree--hospitals have not covered the issue of providing gluten-free diet properly for patients. So, you're doing the right thing by bringing in your own food for your child.

At my hospital, I'm seeing some evolution on the topic, though--somewhat because of MY celiac, and my talking to the dieticians--they are more aware now, but the kitchen staff is not (remember, the kitchen staff is mostly unskilled laborers of high school educational level). So, here's my suggestion: ask for a "dietary consult"--Alex's doctor has to write an order in the chart for this. A dietician will meet with you and you can discuss your concerns and needs. You'll still feel most comfortable with providing your own gluten-free food for your child now, but it will help to raise awareness about celiac disease in acute healthcare for the future. Ask for the dietician to give an inservice on celiac disease to teach the pediatric staff about it--they're just going to see more and more of it in the hospital in the future, so they need to know about it. I know this is stressful for you, but if you feel up to it, use this as an opportunity to get the word out to the healthcare community.

Alex is in my prayers,

Susanna

[uclangel422]

I work in a hospital and talked to one of our dieticians since being diagnosed. The dieticians know about celiac but the food preparers and the kitchen staff do not. The dietician told me that if I am ever hospitalized, to just bring in my own food. There is no guarantee of gluten free food.

I have started an internal campaign to get them to at least start listing ingredients of stuff in the cafeteria, which they so far refuse to do. I am hoping that if they do that, it might make it easier for the in house patients.

[cyberprof]

I had to bring Alex (my fiance) into the ER last night because her fever skyrocketed and she started having some blood in her phlegm and was just generally stuggling quite a bit to breathe. She was admitted and is on an O2 mask and getting IV fluids and antibiotics. They said her chest X-ray looked like bronchiopneumonia (sp?) and her asthma is also complicating matters.

I told practically everyone invloved in her care that she has Celiac, which means no gluten. But this morning she was brought toast as part of her breakfast! She wasn't up to eating anything anyway but I don't even want gluten in the same room as her, especially when she is already sick. I told the person bringing the meal that she absolutely cannot have anything with gluten and she said she would write that down. I then told Alex's nurse about it and she would take care of it but it might her meals might not be okay for the rest of the day. So I said not to give her any meals for the rest of the day and I just brough her some soup from home for lunch.

I'm really worried that she'll get a gluten meal anyway or that there is no way to avoid cross contamination. She's in no condition to protect herself from gluten right now and I can't be with her at certain times to make sure. Visting hours start again at 5:00 but then I have to leave her again at 9:00. I don't know what to do. I'm hoping her hospital stay won't be too long. Her GP should be in to see her tomorrow morning and she has been a great advocate for Alex this whole time so I'm hoping she can help us with this.

I'm so frustrated and worried!

Ryan

I may have to have major surgery soon and will be in the hospital 5-7 days. All the comments from hospital workers are depressing me. I've already told my mom and sis that they will have to keep me supplied with applesauce, gluten-free jello, pudding, cottage cheese and yogurt. And soups too. I am lucky that my sister is an RN and has promised to spend the night with me after I get out of the ICU. And mom will visit while hubby is at work or taking care of the kids.

But we really shouldn't have to do this! At least they could give us a discount since we can't eat the food!

~Laura

[darlindeb25]

Sorry . I've unfortunately never heard of a hospital accomodating a gluten-free diet. If you can, just tell them they are absolutely not allowed to feed her and bring all of her meals from home. Maybe you can give the hospital staff safe foods to give her for times when you're not there.

This is not true of ALL hospitals! Some hospitals do accomodate celiac's. My dad has not been glutened when in the hospital--my sister is celiac and the dietician of a hospital. She has trained everyone on her staff to cater to celiacs. She also has been asked to teach the dietician and staff at Sparrow Hospital in Lansing to deal with celiacs. I know there are places out there.

It's not fair to use a blanket statement to cover all hospitals.

The hospitals who tell a patient to bring their own food from home are totally out of line. We have as much right as the next guy to have the appropriate care taken to assure we are safe. They handle diabetes, cholesterol patients, heart patients--they can do gluten free as well. There is no longer any excuse for this type of negligent behavior in any hospital--the word is out.

I so tired of it being to tough to have a life outside of our own homes!!!!

[johnsoniu]

Sorry . I've unfortunately never heard of a hospital accomodating a gluten-free diet. If you can, just tell them they are absolutely not allowed to feed her and bring all of her meals from home. Maybe you can give the hospital staff safe foods to give her for times when you're not there.

I was actually in the hospital being treated for mal-nourishment when I was dx'd. They put me on a gluten free diet. At this particular hospital, you call down to the kitchen to order your meals, kinda like room service. Once my chart was marked as gluten free diet, it evidently comes up on their food services computers and items that contain gluten are flagged. When the dietician came to see me, she said they also prepare their gluten free trays in a separate part of the kitchen to lower CC issues.Hopefully, more hospitals will begin following this type of program. The hospital was St. Joe Regional Medical Center in South Bend, Indiana.

[stef-the-kicking-cuty]

I'm already afraid of August. I don't know, if everything will go well. I might have to stay in the hospital for a few days after I delivered, since all female members of my immediate family always had problems with giving birth. So might I. I was planning on going to the hospital next week to register and to ask the kitchen about this issue.

Ryan, this might not be the healthiest food at the moment, but maybe you can bring her some of those meals, that someone could heat up for her in the microwave? This way you don't need a cooler. You know, the ones, where you just add water and the spices in little bags, that are already in there? Like the Taste of Thai thingys, most of them are glutenfree. This way you don't have to worry about the food staying cold all day. Then some fruit as "sides" like apples, pears or bananas could do it, too.

How is it with hospitals over her in the states??? In Germany they have "TV rooms" on every station that sometimes have microwaves in them, or refrigerators. Just curious...

Hugs, Stef

[HawkFire]

When my child was in the hospital, they did not know about a gluten free menu. It was pathetic. I had the kitchen staff prepare hard boiled eggs, orange sections, apple sauce (that I confirmed) and other fruits and juice and water. I then brought in toasted bread with jam, baggies of cereal, and other food items in a small cooler. My child had more than enough to eat. I was mad at the incompetence of the hospital.

[blueeyedmanda]

The hospital I work at uses an electronic system and allergies and other special alerts go into the electronic chart. This way the kitchen staff is aware of the food it needs to accomodate the patient. They do gluten free diets here. They order foods from EnerG alot. I have spent enough time in the hospital as a patient to have to get this menu.

I have not had any problems with the kitchen staff. I have lots of cancer patients who are on a neutropenic diet.

[casnco]

I had to bring Alex (my fiance) into the ER last night because her fever skyrocketed and she started having some blood in her phlegm and was just generally stuggling quite a bit to breathe. She was admitted and is on an O2 mask and getting IV fluids and antibiotics. They said her chest X-ray looked like bronchiopneumonia (sp?) and her asthma is also complicating matters.

I told practically everyone invloved in her care that she has Celiac, which means no gluten. But this morning she was brought toast as part of her breakfast! She wasn't up to eating anything anyway but I don't even want gluten in the same room as her, especially when she is already sick. I told the person bringing the meal that she absolutely cannot have anything with gluten and she said she would write that down. I then told Alex's nurse about it and she would take care of it but it might her meals might not be okay for the rest of the day. So I said not to give her any meals for the rest of the day and I just brough her some soup from home for lunch.

I'm really worried that she'll get a gluten meal anyway or that there is no way to avoid cross contamination. She's in no condition to protect herself from gluten right now and I can't be with her at certain times to make sure. Visting hours start again at 5:00 but then I have to leave her again at 9:00. I don't know what to do. I'm hoping her hospital stay won't be too long. Her GP should be in to see her tomorrow morning and she has been a great advocate for Alex this whole time so I'm hoping she can help us with this.

I'm so frustrated and worried!

Ryan

Ryan, Alex is lucky to have you watching out for her. I believe this is normal in the hospital. I work at a large metropolitan hospital in Ohio. Recently a patient was transfered to our floor and her history and physical mentioned she had Celiac disease. No big red sign, no mention on her wrist band. So when her tray came that morning I made sure I took it to her. When I inspected it I found Rice Crispies, which contain Malt! When I called the dietary office to inquire why she was given them I was told they always give gluten free patients Rice Crispies!!!!! I informed them that this cereal was not gluten free and was not appropriate for a gluten free diet. I was then transfered to a dietition. Oh, her answer was LOVELY!!!! I thought my head would pop off my shoulders! She said, and I quote, "Well, there isn't that much gluten in Rice Crispies and some people with Celiac disease can handle eating them." I asked her if she would send a diabetic a little bit of glucose because some people could handle it, or if she would use peanut oil for someone who had a peanut allergy? And she asked me, " Well what will I give her to eat if she can't have Rice Crispies!?" And yes, she was frustrated with me. I gave her a list of food that was safe and suggested she contact Childrens Hospital here in town for further information. I reported her to my supervisor. Unfortunately I don't think it did any good. Now every day I look at her tray. Unfortunately, I only work 3 days a week. FORTUNATELY, my coworkers are great and have been learning about my disease and are becoming very knowledgeable about gluten. Frequently they call me at home to make sure our patient is being feed safe food.

Good luck with Alex. Take nothing for granted. Any information you bring to the staff on the floor concerning Celiac disease will help protect her. And of course, hopefully she is healthy enough to identify a contaminated tray.

Debbie

[kbtoyssni]

I agree with everyone in that you should bring all her food. Or only allow the hospital to give her food that can't be contaminated: hard boiled eggs still in the shell, bananas, oranges, etc.

And you sound like the best finance ever! Alex is very lucky to have you.

[mommida]

My daughter was just hospitalized for dehydration from rotovirus and strep.

You pretty much have to supply your own gluten free food. On the second day the dietician called and she knew what she was doing to have the food ordered for the next day. It took the hospital two days to figure out the gluten free diet. Don't take the chance the person that understands the gluten free diet will be there where you need him/her.

If you end up with a hospital that is an hour away from your home, you need to figure out where the nearest gluten free food supplier is to that hospital.

A note to all parents of young children.... KEEP EMERGENCY SUPPLIES OF GLUTEN FREE FOOD AND PERSONAL HYGEINE KIT, INCLUDING GLUTEN FREE PAIN MEDICATION FOR YOURSELF AND CELIAC KIDS ON YOU AT ALL TIMES!!! Don't get stuck like I did with my sick child in the hospital staring at some off the wall brand of toothpaste with suspicious ingredients, nothing to eat, and a migraine headache till I projectile vomitted all over the only clothes I had. A hospital is the last place you want to be when you are on a gluten free diet.

L.