Help! Celiac And Appendicitis

[SilverSlipper]

(Typing from Ipad plz excuse errors.)

Fri my dd was not feeling well. Ended up in er with appendicitis. Appendix removed sat morning. Afterwards the nurse said the cafeteria would not guarantee a gluten-free meal. (We are at children's hospital) . Dr and nurse spoke with them and they said they would do it but no guarantee. Dd wont eat but I sent a friend to store for me. So frustrating!

She still has pain and cannot walk. We hoped to go home today but cant until shes better. Is there any connection between celiac disease and appendicitis or difficulty recovering from abdomen surgery? I am desperate to get home (an hour away) so I can cook again.

[bartfull]

I can't answer your questions, but I am OUTRAGED that a hospital, and place of "healing", refuses to take care of your daughter's dietary needs! Is there a healthfood store or a large grocery with a gluten-free section? Even if you can't cook for her, maybe you can find something safe for her to eat. And then speak to the hospital administrator. Go all the way to the top. Tear his head off if you have to and then write a letter to the newspapers in that vicinity. Then, I'm not sure, but there must be some kind of state agency that oversees hospitals. And even the AMA. Write to them all!

GRRR...this makes me so angry I could spit!!

[GottaSki]

Not surprised here...I spent 8 days in the hospital and was released a few days early because I could not get gluten free meals - and this was at a major teaching hospital with a Celiac Center - yep believe it.

The only thing I could eat was ensure and some frozen treat that I was nearly certain was gluten-free. I didn't even want the ensure, but it was the only thing they were certain was gluten-free. Oh if your daughter can have milk - ask for chocolate milk or pick some up in the cafeteria. They couldn't even manage to send me hard boiled eggs. My surgical staff and nurses are now thoroughly briefed on how serious being 100% gluten-free is to a patient with Celiac Disease, but still ticks me off royally that I couldn't eat safe food in a hospital!

I won't suggest taking your daughter home too early -- but do suggest you remind her doctors at every opportunity that there is no safe food for your daughter and would like to bring her home as early as possible.

Hang in there!

[SilverSlipper]

A friend went to a health food store and an employee helped her. I have doughnuts and chix nuggets meals (gluten-free). The nurses have been upset and encouraged me to write wheen we get home.

We cant leave early. They wanted to send us home today but her recovery is slower than expected. She cant walk yet and hasn't felt like eating. I hate that you had problems too.

[rosetapper23]

So sorry your daughter is going through this! Can you bring her some gluten-free ice cream (e.g., Haagen Daz in the individual size)? If you bring some gluten-free soup from a grocery store, nurses will usually agree to heat it up in a microwave.

Hospitals are still notorious for not providing gluten-free meals...and it's an embarrassing shame! When I had surgery six years ago, the hospital staff refused to feed me because they said they couldn't ensure that the food was gluten free...but then they insisted on giving me medications that I knew weren't from the same manufacturers that my usual meds came from. They refused to call the companies to check on the meds' gluten-free status, and I broke out in Dermatitis Herpetiformis while recovering in the hospital. I was so weak from not eating, I became dizzy and fell to the floor when I arrived home. My mom also checked herself into a hospital two years ago because she'd fainted, and they kept her overnight for tests. They insisted that she eat, but they didn't seem to understand what foods contained gluten. Well, they glutened her so badly, she became extremely ill and was not allowed to check out of the hospital for several days--there had been nothing wrong with her when she got there, and then they MADE her sick!

I hope you DO write the hospital to complain--your daughter's treatment is unacceptable. Regarding her healing, perhaps she's a little deficient in Vitamin K or iron? If not, she may not be accustomed to the amount of pain that accompanies abdomenal surgery. She needs to get up soon and begin to walk around--and even children/teens without celiac will cry and insist that it is too painful to do so. I hope she feels better soon!

[1desperateladysaved]

I am planning my family brings my food if I ever need to stay in the hospital. I might be so bold as to bring my electric skillet or crock pot. Because what else can a person do. You need good nourishing food when you are recovering.

Diana

[Bubba's Mom]

Most hospitals have patients representatives/advocates that you can lodge complaints with. See if they have that there.and contact them ASAP?

Your daughter should be able to eat bananas or applesauce which are usually not opened..and therefore safe? I find it maddening that they can't safely feed your daughter!

[SilverSlipper]

Most hospitals have patients representatives/advocates that you can lodge complaints with. See if they have that there.and contact them ASAP?

Your daughter should be able to eat bananas or applesauce which are usually not opened..and therefore safe? I find it maddening that they can't safely feed your daughter!

Yes she can eat those. She has had applesauce. It would be good to have actual food though. They want her to have a bm before leaving. I plan to talk to Dr today and tell him she wont because she wont eat until we are home. She wants food but I cant get what she wants here.

[GottaSki]

Has she been up walking? It is hard recovering from abdominal surgery, but the walking helps to get things "moving" and it will help her to feel better - laps around the unit you are in can really speed things along in many ways. Start with one lap and then try two....I've recovered twice from abdominal surgery - the first time I laid in bed, the second I got moving the morning after surgery - made all the difference in the world. The second one happened to be the stay that I couldn't eat anything so I REALLY wanted to get out of there. I got to know everyone working on the floor because as much as the doctors and nurses tell everyone to get up and walk...I don't think they see it happen much - judging by the looks I got from all types of hospital staff.

Don't overdo, just try - if she is still being given pain meds, a great time to walk is shortly after they are administered.

I hope she is feeling well enough to go home very soon - both for you and her - being a parent in the hospital of a sick child is no easy feat!

Hey I just thought of something - is there a support house for parent's staying with their children at your hospital? Perhaps they might have some gluten-free options there? We have a Ronald McDonald House at our Children's Hospital - don't know, but yours may too?

[GFinDC]

Well, I'd be telling the hospital not to charge you for the food then. If they aren't providing it they shouldn't charge you for it.

Bananas, apples, oranges, lara bars and peanut butter are not hard to find. Some stores even sell boiled eggs.

[eatmeat4good]

Hospitals can't cook gluten free. It would be worse if they sent you food and said it was gluten free when it really isn't. The reality is they bake cakes and cookies in those kitchens so unless they are going to have a dedicated kitchen for Celiacs, they can't guarantee their food will be gluten free. If there were enough patients with this problem, they would do it. I agree with lodging your complaint with the patient advocate and seeing that you are not billed for food. But kitchen staff cannot be educated or trained or provided clean equipment on short notice, so they are right to say they can't do it. It does seem a shame that a sick child can't recover in a hospital for children. I'd talk to the Dr. about taking her home. Surely he has to see the point that she won't recover if she can't eat safely. Or arrange for someone to sit with her so you can go cook her a meal. With abdominal surgery the last thing you want is contaminated food, omg I cringe at the thought of her eating hospital food. Be grateful they didn't try, and find a way to get her some food or get her home. I hope things change in the future and we all have to try to help make those changes because more and more people are going to need gluten-free hospital food. Unfortunately we are not there yet.

[SilverSlipper]

Thanks for all the replies. We're home! We came home yesterday and I immediately went to the store. It was one of those trips where I had no list or menu in mind. I had little time to plan and just bought meat, veggies, fruit, milk (whole and full cream) and cheese. (We live 30 minutes from a decent store).

I am actually grateful that the kitchen staff refused to guarantee it. I think it's ridiculous, but I'd rather people be up-front and tell me they can't do it than to just guess at things. I do think it's possible to cook gluten free though. Aluminum foil and steamer bags can do wonders as long as the prep/cutting area is safe. It was an odd situation - the doctors and dieticians maintained that it could be done, the nurses were uneasily caught in the middle and relaying the concern of the kitchen, and the kitchen staff personally told me that they weren't familiar with what to fix and for me to please double-check it. (Most of the problem was due to concerns about preparing - my daughter is sensitive to cross contamination). No matter who spoke to her, my daughter's answer was always a polite refusal. (She wasn't upset or mad, she simply refused to eat unless it was sealed and she personally checked the ingredients).

The other frustrating thing was that I never knew what was going to come up on her tray. (I kept ordering, hoping for individually wrapped things. I would eat her tray if it was edible. The food there is not too bad, but this was bland, bland, bland.) We went in on Friday, but didn't receive meals until Saturday (through Tuesday). Some days chocolate milk was okay, other days it was not. (She refused to drink it anyway since she didn't recognize the brand and she's been glutened by chocolate milk before). Ranch and Italian dressing caused confusion and some days they would send one, other days they would say Ranch wasn't safe and would only send Italian. I always asked for pudding cups and margarine, but neither was determined to be safe. If they weren't sure if an item I circled was okay, they marked it off and sent the tray without it. One meal was only steamed cauliflower and a salad. The gift shop had cheese popcorn and yogurt. We lived an hour away from the hospital, so I couldn't easily leave.

Apparently, during removal the appendix ruptured and that is what they are blaming the extra pain/discomfort upon. She is currently pain free but moves slowly and carefully. She is 11 yrs old and weighed 58 lbs when she went in. She now weighs 54 (although I'm sure some of that is from mild dehydration which I could tell she had when we left).

She is drinking a lot now and my husband made spaghetti and garlic bread for dinner last night (she ate about 1/3 of it). I have wonderful things planned to cook today so I feel good that we're on the upswing. I still plan to write a nice note and let Children's know of my experience. If nothing else, they should be able to keep frozen meals on hand or shelf-stable soups/food that could be safely prepared.

Thanks for everyone's comments. I appreciate them and am SO happy to be home.

[rosetapper23]

I'm SO glad she's finally home and feeling better! I've been thinking about her over the past few days. Only 54 pounds? That makes me want to cry! Yes, please feed her anything she wants.

Thank you for sharing with us how things turned out. Best wishes to her for a fast recovery!

[Bubba's Mom]

I'm so glad she's home. It's really scary that a Hospital can't feed someone safely!

I'll bet she improves by leaps and bounds now?