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Hospital Food: Can Gluten Free Needs Be Met?

Do You Require A Special Diet? How's That Hospital Food?

Fact: Patients who require special diets can’t always rely on safe food while in the hospital. Many often have to rely on family and friends to bring their meals. 

Why is it that Disney World can feed people with various dietary requirements but many medical facilities cannot? Something is terribly wrong here!

*This isn’t true of all hospitals, but MANY!

Our Unexpected Experience

My son was in the hospital for sixteen days after a tragic auto accident in 2012. Hospital food, of course, was the last thing on our minds in the beginning. He wasn’t even able to eat (or drink) for the first 11 days after his accident. (This was due to injuries, not diet).

Once he could eat, however, one of his first meal trays had to be removed. I asked the broth they provided was gluten free. A call was made, the broth was taken away. Good thing I was there to ask, but no one brought anything to replace it. What was left for him to eat? Jello. That was it. And let me tell you, those days were horrible enough as they were! 

Michael never tested positive for celiac like I did, but we had discovered, (after I was diagnosed), that he had non-celiac gluten sensitivity. I informed his medical staff of his diet restrictions. They put a food allergy bracelet on his wrist. But that warning bracelet didn’t mean they knew how to provide for him (or for any of their gluten-free patients).

This mom was rarely going home, much less cooking. We had to rely on protein drinks from a wonderful friend and from the hospital cafeteria because we couldn’t rely on the hospital food provided.

When Michael did finally receive a dinner he could eat, it was a relief and a joy. I remember asking the gal who brought the tray, “What’s for dinner?” She gave me a smile and said, “Gluten-free tomato soup.” 


Gluten-Free Food In Rehab: A Continued Challenge

After sixteen days in the hospital, Michael was ready for rehab. I called the facility to ask if they could provide for his gluten-free needs.  They assured me they could. Great! Bye-bye hospital food, hello rehab food.

*Of course, we were happy that he was going to rehab for reasons far greater than the food! It meant he was off all that equipment. It meant he could work harder on recovery. It meant we were getting closer to him being able to come home. I’ll never forget one of his physicians while we were waiting for his transport. His comment: “We weren’t expecting this.” His recovery truly was a miracle.

Back to the food:

Yes, I was assured Michael would receive safe gluten free meals in rehab. What did he eat, however, that very first morning for breakfast?—NONgf cereal. His dad stayed with him that first night and had to leave before breakfast. I arrived shortly after breakfast. Seeing him sitting up in bed in PJ pants instead of a hospital gown was wonderful. Seeing that empty box of NONgf cereal, however, set me on fire. 

He Was in ENOUGH Pain!

My son wasn’t questioning (or even caring about) his food. And guess what?– No one asked what his reaction to gluten was.

Some people vomit. Some get diarrhea.  Michael was recovering from a majorly fractured and recently repaired jaw. He was recovering from broken ribs and a very large wound and surgical repair to his lower back (to list the major damage).

Gluten exposure could have had catastrophic consequences. If he vomited or experienced diarrhea, I just cannot imagine. 

How does gluten impact him? It zaps his energy and his mood. It causes canker soars. And let me tell you–he didn’t need one single thing more to add to his misery!

Food: A Continued Battle

The food issue was a continued battle during Michael’s stay in rehab. The menu was not user friendly, (especially for a brain injury wing)! He was told he could write certain items in (burger without a bun, tuna salad, gluten free pasta, etc) instead of just checking off his preferences. 

He was not about to write items in. What he needed was a menu full of items he COULD have. It would have made more sense if everything on HIS menu filled both his mechanically soft food needs (for the broken jaw) and gluten-free needs.

He wasn’t receiving a balanced diet. His food was far from appealing. What was on his tray when I arrived (on TWO occasions)? Plain soft-cooked carrots, milk, and ice cream. That was IT! Ridiculous! 

I Had to Bring Him Food

I was finally sane enough to go home more frequently by this time. When I did, I cooked for my son: white chili, chicken and dumplings, meatloaf, brownies, and more. I filled his meals with protein and vegetables, while keeping them soft and tasty.

I am not here to totally blast hospitals and medical facilities. Remarkable surgeons and nurses saved my son’s life. Amazing medical care! Such caring nurses and staff! When it comes to the needs of patients with special diets, however—–wow! It was an eye opener.

The stories I’ve heard through the years since our experience have proven that a lack of safe hospital food for patients who require gluten free is an issue that continues far more often than not.

Coming Home! Continued Advocacy

Michael came home after eleven days in rehab. Everything that was in his room came home with him, including the following day’s menu. I made a copy of this menu and sent it, along with a letter and a copy of the children’s book I had previously written to the head of the rehab facility. 

I had been getting promises (while he was a patient) that options would be written into his menu. These changes, however, were never made. This menu proved that fact. I could have left well enough alone. Michael was home. HE was my only focus. Having him home and doing so unexpectedly well was the only importance at that time. How they had fed (or didn’t feed) him didn’t matter anymore. 

But I couldn’t leave it alone. Celiac and gluten-free advocacy had been a passion of mine for over a decade at this point. It grieved and angered me to know that my son’s diet lacked because of their lack of education about special diets. It grieved me to know that there would be future patients along the way who would be mistreated the same way. I felt an obligation to stand up for them.

One Person CAN Make A Difference!

Well, it appeared that this letter made an impact. I received a call about a month after Michael came home; proof that one person can make a difference.

The caller told me about a special meeting they held in response to my letter. The purpose for this meeting was to make changes in how the facility provided for patients who require special diets. I expressed my gratitude, but was then assured that I shouldn’t have to thank him. He said a system should have already been in place.

And he was right. Patients deserve safety in all areas of care, and this includes diet. Training should be a requirement of every hospital, rehab, nursing home, and school.

One person making one difference in one facility is a very small drop in a very large bucket. But we need to take a stand. We are living in a time where technology has the world available to us at our fingertips through the buttons on our phones. Food intolerances and food allergies, however, continue to be misunderstood, overlooked, and diminished. Inexcusable.

Food Is Our Medicine

Had my son been allergic to penicillin, an appropriate antibiotic would have surely been substituted. It is just as possible to substitute ingredients in order to provide safe food for the person who must avoid particular ingredients. If Disney World can do it, surely our medical facilities can! We should be able to expect safe and adequate gluten-free hospital food.

It is unimaginable now, but special education wasn’t always required in our public schools. People in wheelchairs didn’t always have access to public buildings, also unimaginable now. One day, hopefully sooner than later, everyone who requires a health related special diet will be able to expect hospital food that meets their medical requirements. But for now, in the second decade of the third millennium, a great lack of education means that those who don’t fit into the dietary norm are too often left without adequate food.

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This Post Has 4 Comments

  1. Debra Bowman

    I had surgery in Dec. and asked my doctors as well as the hospital personnel, PRIOR to my surgery, who I needed to speak to about GF food for my stay. I am Celiac in addition to a number of food allergies. Everyone threw up their hands and shrugged. I decided I wasn’t going to trust the fact that I would be provided meals within my dietary requirements and packed a cooler with meals for a week. The nurses were instructed to provide me with only ice and water. That did not keep the food service personnel from coming in and plopping a tray down in front of me. Several times I asked them to remove it, only to have them go tattle on me and come back with a nurse. I was told I was being ridiculous and I could ‘probably’ eat so and so. My reply was always the same. I was not going to risk suffering from being Glutened or being cross contaminated while I lay in a bed trying to recuperate from surgery.

    1. Debbie Simpson

      I am so sorry that happened to you. No matter how many times I hear one of these stories, I get so upset every time. But to be chastised for taking care of your own dietary needs that they could not — that is beyond horrible. Gluten Free Respect lacking in a MAJOR way!

  2. Rob

    I live in Washington Pennsylvania. During the last five years our local hospital has improved.. The first time I took my daughter in the admitting nurse did not even know how to spell celiac. They now offer multiple gluten-free options for their hospital meals; having said that, my mother-in-law who is also celiac, was given Cheerios for breakfast, because they are labeled gluten-free. Still work to do

    1. Debbie Simpson

      It is so good to hear that things are improving. The whole Cheerios thing is a disturbing issue of its own.
      Continued education is needed, as are labeling laws.

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