I Was Given Gluten While Hospitalized For Celiac Complications

Lying in my hospital bed, I had an IV in one hand and a feeding tube up my nose. I weighed 83 lbs at 5'3"...as a college freshman. Celiac disease was literally killing me, even after I'd switched to a gluten free diet.

Yet, my hospital lunch - with "Gluten Free" written in big letters on the top of the box and "no wheat" neatly checked off on the meal order request - contained a chicken sandwich with a bun that seemed far too soft and fluffy to be gluten free. I sniffed it. I even tore off a small piece of the bun to try. But, in the end, I called my nurse to ask if this sandwich was really gluten free like it stated on the package.

The answer? There had been a mistake. My "gluten free" hospital meal contained a large serving of the very food that landed me in the hospital in the first place: gluten.

I Was Hospitalized for Celiac Disease Complications...and the Cafeteria Gave Me Gluten

Have Celiac Disease? The Hospital Challenges You Could Face

True, the quality of care that patients with celiac disease or food allergies receive will vary by hospital. It's also true that, in recent years, many hospitals have made huge improvements in their cafeteria menus. I've even heard of hospitals with a full gluten free menu, complete with desserts! This progress, however, is not universal. In fact, stories of celiac or food allergy patients struggling to eat safely while hospitalized are still far too common.

You only have to Google "hospital gluten free" - or spend a few weeks in a gluten free Facebook group - to learn what I mean. For the sake of this post, though, here are a few examples:
  • One Thanksgiving several years ago, Celeste Clevenger's gluten free husband ended up in the hospital. She was thrilled to read the hospital's menu and see that the cafeteria offered "gluten free options." She was less thrilled when the cafeteria staff didn't seem to know much about the gluten free diet and sent up a "regular" Thanksgiving dinner instead of the promised gluten free alternative. 
  • More recently, Debbie Simpson's gluten intolerant son was in a horrible car accident. Due to his injuries, he couldn't eat for several days. One of the first meals offered? Chicken broth that contained wheat, which Simpson thankfully noticed before her son drank the broth.
  • In Helen Fletton's experience, hospital food can be especially dangerous for celiac patients when they're groggy from anesthesia and potentially unable to advocate for themselves. In one incident, Fletton was offered a wheat-filled muffin even while wearing a bright red wristband that clearly said, "WHEAT ALLERGY."
The even more worrisome aspect of these stories? They're only the experiences that have been published online.
I Was Hospitalized for Celiac Disease Complications...and the Cafeteria Gave Me Gluten
Maybe a shirt like this would help?

Want to Increase Celiac Awareness? Don't Forget the Hospitals

The purpose of this post is not to vilify hospital teams who don't know how to safely feed celiac patients. Despite the cafeteria issues I had during my own hospitalization, I am grateful for my doctors and nurses every day. They didn't give up on me, even when my body wasn't reacting to a gluten free diet like it "should" have. They kept trying formula after formula to find the liquid diet that would heal my damaged intestines. They literally gave me my life back. (Not to mention that, when my gastroenterologist heard about my "gluten free" lunch, she seemed even angrier than I was.)

However, as the anniversary of my of my hospitalization grows closer, I've been thinking more and more about that hospital lunch. And I've realized that, for all the gluten free community has done to raise celiac awareness in the common public, we need to educate doctors, too.

I Was Hospitalized for Celiac Disease Complications...and the Cafeteria Gave Me Gluten
What celiac disease really "looks like" - from Gluten Dude's "The Faces of Celiac Disease"

Compared to years ago, celiac disease and the gluten free diet are thankfully more well-known. However, there are still far too many myths flying around. For instance, the myth that people with celiac must be skinny. (Yes, I've heard of a doctor who actually rejected a woman's celiac diagnosis because she is overweight). Or the misconception that having a little gluten "won't hurt." (News flash: even a little gluten will hurt someone with celiac disease, in more ways than one).

We need to improve more than general public knowledge, though. I want to be able to trust doctors and the food they give me. When I was hospitalized, I'd only been diagnosed with celiac disease for a few months. I didn't know if gluten free bread could look as "normal" as the bun on my chicken sandwich did, but it sure looked tasty. And after dealing with a lack of appetite for weeks, it suddenly took a lot of effort to keep myself from biting the bullet (or the bun, in this case).

The only reason I called the nurse instead of digging in? I trusted my gut. I decided that even doctors couldn't be trusted with my food...and that paranoia turned out to be true. But I don't want to live that way. Does anyone want to have to be on high-alert for the rest of their lives, unable to trust any food they don't prepare with their own hands?

I Was Hospitalized for Celiac Disease Complications...and the Cafeteria Gave Me Gluten

This story doesn't have a happy ending per se. It's happy in that I eventually healed on the gluten free diet, as I've shared in detail in this post, and that I didn't eat the gluten-filled meal that mistakenly landed in my lap. However, even four years later, I don't have a solution to the bigger problem: the lack of celiac awareness still found in some hospitals and medical communities.

What I can offer? A few reminders. First, know that our work as celiac advocates is not done. It's not enough for celiac disease to be diagnosed more often or for gluten free food to be more accessible and widespread. (Although those two goals are still important, and steps made accomplishing them should definitely still be celebrated.) We also need to make sure that celiac disease is included in common medical training, and that doctors see beyond common celiac stereotypes.


Members of the celiac community have their own lessons to learn, as well; mainly, to never be afraid of being your own advocate. You may not know everything that a doctor knows. However, depending on your doctors' familiarity with celiac disease, they may not know everything you know about celiac disease. So ask questions. Request more information. If you need to, request a second opinion or another doctor. You are in control!

I Was Hospitalized for Celiac Disease Complications...and the Cafeteria Gave Me Gluten

How to Eat Gluten Free in the Hospital

And what if you do end up in the hospital and are worried about eating a safe, gluten free diet? Here are a few tips from the Gluten Intolerance Group and the Northeast Ohio Celiac Network on how to eat gluten free in the hospital:
  • If you know about your hospital visit ahead of time, contact a hospital dietician or a food service supervisor and talk about their gluten free options and celiac protocol. You might also want to contact any of the departments (pharmacy, pre-op surgery, medical surgery, etc) you will be treated by.
    • If you have an emergency visit to the hospital, contact one of the hospital's registered dieticians as soon as possible to discuss food options and hospital procedures.
    • In the case of a long-term, planned hospital stay, you can also ask if the hospital's dietary team could special order some gluten free pasta, baked goods, etc. to be used during your stay.
  • Learn how your hospital handles allergies, such as using a medical wrist band. Although celiac disease is not an allergy, an "allergy" warning can help alert hospital staff to your dietary restrictions.
  • Request that a phrase like "Celiac Disease: All foods and medications must be verified gluten-free" be written in your chart or placed on your hospital door.
  • Ask if you can bring food from home, and prep safe meals (like these 19 easy gluten free dinner recipes!) to be brought my friends/family members or stored in your room. You could also bring gluten free freezer meals to be warmed up by your nurse(s).
  • If something doesn't look "right" or "safe," ask!
I Was Hospitalized for Celiac Disease Complications...and the Cafeteria Gave Me Gluten

One day, I'm hopeful that all doctors will be well-versed in celiac disease...and that all hospital cafeterias will know how to safely feed their celiac patients. Until that day, though, I'll try to keep my "gluten free" hospital lunch in the back of my mind. And, any time I feel uncertain about my own health or safety but don't want to "be a bother," I'll remember that chicken sandwich, take a deep breath and say, "Can I ask you a quick question?"


*Also found at Wine'd Down Wednesday, This Is How We Roll, Share Fest*

Have you ever been hospitalized while following a gluten free diet? What was your experience? Tell me in the comments below!

Comments

  1. I'm not celiac, but I wanted to read your story. I can't believe you'd have to be vigilant in a hospital of all places!!

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    1. Thanks for commenting, kristen. Have a great week!

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  2. Had to have an operation in May and the gluten free food in hospital was dire. They could not accommodate me for breakfast, it was a yoghurt every day. The lunch time meal was a salad, which consisted of a lot of lettuce, a few tomatoes and cheese, for the evening meal they microwaved a sort of casserole which I would not give a dog to eat. I was never offered gluten free bread or pasta, non existent. Luckily I was not hungry as my husband offered to bring me in food but just didn't want it. When I was admitted, they were supposed to write 'gluten free' on the board above my bed but that never got done either. Before my op I had an appointment with the Surgeon and I expressed my concerns over gluten free food and he actually advised me that if I wanted to make 100% sure I would be safe, to ask my husband to bring in all me food for me. I know there are good hospitals that provide gluten free menus, might add that a lot of them are private, but in the last 3 days had 2 stays in hospitals and not once have I had a decent gluten free meal and to be honest, cannot see anything changing what with the cutbacks in the NHS.

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    1. I'm so sorry that you had to go through that! Thank you for sharing your story and I'm sending lots of gluten free love your way!

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  3. Such an excellent article! I love how you are using this stating you want to help educate, not humiliate, the hospitals and doctors. We had a similar experience when we had a foreign exchange student. He was in the hospital for a week due to ketoacidosis from this Type 1 Diabetes. He also had Celiac Disease. One of his first meals they sent him breaded chicken, which definitely was not gluten-free. Not only was that dangerous for this Celiac Disease, but also for his T1D, because the gluten in his system would prevent him from absorbing his insulin. Our support group has tried multiple avenues to try to talk to the dietary staff at the three hospitals in our county to be of help on this issue, but they have not been all that willing to talk to us. We just try to speak truth in ways in whatever avenues that will listen.

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    1. Thanks for the kind words, Margaret, and for sharing your experience. All we can do is try to educate others. If they aren't willing to listen, we just have to keep hoping that they will be more willing to listen in the future! <3

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  4. Casey, This read like a horror story. This is so terrifying. Waita trust your gut!

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  5. I hope you will be all right soon. This read is true horror story. With best regards!

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    1. Thanks for the kind words! I am doing much better now thankfully.

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  6. Wow! It's so so important that everyone becomes more knowledgeable of this autoimmune disease. I have a friend with celiac disease and she was having symptoms for 9 years before she insisted the doctors test her. They were not very pleased with her insisting and it turned out that was exactly what she had and they were shocked/apologetic. It's so important to spread these stories to make others aware of this so people can not only be diagnosed, but respectful and understanding. Thank you for sharing your story!

    xo, Taylor (thesprinkle.tayloramead.com)

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    1. Thanks for your kind and thoughtful comment, Taylor. And your friend is a major BADASS for advocating for her own health so strongly! Much love your (and her) way! <3

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  7. I have food allergies (corn and wheat, but corn is the kind I have to carry an epi-pen around for). I went to the hospital for jaw surgery. Had the allergy bracelet, discussed all of that ahead of time. First meal included Ensure. It's got corn in it. I knew because I was going to be wired shut for weeks at home and had researched the liquid diet options rather well. My husband ended up having to bring some from home. At another hospital, having my son, my food allergies were listed and they were very good about following them. The food wasn't good, but at least it wasn't going to kill me. One of the things I learned from the jaw surgery was that it isn't the nurses or doctors that I had to educate so much as the kitchen staff. My state has been pretty good about food allergies and making restaurants know more about it, but hospitals seem to have been left out of the loop on it.

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    1. I'm so sorry you had to go through that, but I'm glad you also have had some good experiences in the hospital. Food allergy awareness has definitely spread more quickly to some parts of service industries than others.

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  8. Really great tips, Casey. Thank you for making more people aware.

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  9. Casey, thank you for sharing your story. I am just so very sorry for all you have been through. Yes, a difference needs to be made and your advocacy and your voice are important. I went through this with my son 5 1/2 years ago. We almost lost him to a car accident; the doctors did not have my optimism----but we were ultimately blessed with a miracle recovery. It was frightening and devastating that with everything else we were facing with him, (including a severe brain injury) this mom had to fight diet (once he was actually able to eat). One of his first meals (after being unable to eat for over 10 days, had to be removed when I asked if it was gluten free. The rehab facility promised me they could accommodate gluten free. Nope. And, as I shared with them, if he was one to vomit or have the big D with gluten, they would have had to peel me off someone, because they gave him gluten---(and with his broken jaw, ribs, back surgery and more....the consequences would have been horrific. They ultimately changed the way they handle special diets (for future patients) but this is all too common and horrible horrible consequences are a risk all-the-time. I shared our gluten free struggles in the book I wrote about his recovery---and has been my fight ever since. I just don't understand how this still happens. Thank you for your article.

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    1. Thank YOU for sharing your story! What a horrible situation for you and your son to have to go through. Sending lots of gluten free love your way! <3 <3 <3

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