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August 26, 2013

Being Gluten Free While In The Hospital as a Teenager

When I visited the hospital in mid August I noticed a lot of new things were added to make eating gluten-free easier. It had been 2 years since I stayed in the hospital last, so I was worried about what my options would be when it came to food. I was very surprised to see how incredibly knowledgeable the kitchen was of gluten-free food and how many options they had as well. The food and options available was one thing, but the doctors and their knoweledge of celiac disease was a completely different story. It still amazes me to see how little doctors know about celiac disease and how unaware they are on this topic. If my hospital visit made me realize anything, it made me realize that the kitchen staff of the hospital knew more about the gluten-free diet than the doctors themselves. Pretty upsetting to hear when it comes to the medical community..

The food in hospital now:
Obviously hospital food is never going to be amazing. When I visited this time I was expecting not to have many options at all. I came prepared with tons of Kind Bars, Cape Cod Chips, nuts, Chipotle, and just tons of stuff that I like to eat. But when I got to see what they had available to eat, I was very surprised! Of course there was tons of crap like candy, fried foods, and other things that make me angry to see in a hospital. But the options I noticed for people that are gluten and dairy free was amazing! They had an entire gluten and dairy free menu for me to choose from with at least over 30 options. The kitchen was also aware of my allergies and what I couldn't have before I even ordered anything so I knew my food would be safe. I was a little worried that the staff of the kitchen may not be aware of everything like cross contamination and such, but they were very aware. They were even accommodating to make certain options dairy free for me which was great. I'll admit that the food didn't taste great, but hey, you can't expect much from the food you get in hospitals anyways. I was at least happy to know that what I was eating was almost guaranteed gluten-free despite the taste. Although the food wasn't great, it felt good to eat safely in a place I already had so many worries about.

The doctors in hospitals now:
The amount of gluten-free options available at the hospital was very surprising since I was expecting so little. I could also say the same thing about the doctors. The expectations I had for what these doctors would know about celiac disease was not very high. My experience with doctors in the past about celiac disease and the gluten-free diet hasn't been great. I'm sure you've all had your fair share of run ins with doctors that have no clue what the heck they're talking about. So that's exactly what I was expecting to run into with my visit this time around...and I was right. There were a couple times where the doctors wanted to get me tested for celiac disease when they already knew I had to be on a diet containing gluten for it to be accurate. Other doctors gave somewhat snarky remarks to my comments on why I was gluten-free and how it's helped me. I was even told by a doctor that eating rice could be hurting me since it contains gluten and I had to correct them. Lol, at that point I was just shocked and thought to myself, "wow, these doctors really have no clue what they're talking about."

It really was disturbing how little these doctors knew about celiac disease. Imagine if I didn't know as much as I did about the gluten-free diet. One of them had to ask me if oats are gluten-free and of course that really concerned me! What if a patient asked a question about oats and got a doctor's response saying that oats were gluten-free? Once again I just felt like celiac disease was not being taken seriously by doctors. It became apparent to me that even after 2 years since being to the hospital that nothing has changed at all with what doctors know. They still know very little about celiac disease which gives me even more of a reason to try and raise more awareness until a noticeable change is seen. Might as well try raising awareness at the age I am now!

There's progress...but not in the right areas:
The fact that there were more gluten-free options in the hospital was great! I loved having so many options to choose from instead of sticking to the basics. I liked seeing a gluten-free menu and feeling somewhat safe about what I was eating for once. I personally think that the addition of gluten-free food in general is great, but really, is it enough? It was apparent in the hospital that many of my doctors were not aware of celiac disease and the gluten-free diet. I knew how gluten affected my body much more than these people did, and they've had to of been doctors for years. If a 16 year old is correcting a doctor about the gluten-free diet then I think we might have a bit of a problem.

It is great to see that there is some progress being made in hospitals. But really the progress is not being made in the right areas once again. It seems like everyone thinks the solution to making gluten-free easier is by creating more gluten-free options. Restaurants are adding gluten-free menus, companies are adding more gluten-free foods, and more gluten-free products are coming out each day. Trust me, I think that's great and all but in what way is it increasing awareness for celiac disease? It's really not. Awareness needs to be made by starting with the doctors and by having them educated first. If we aren't told by our doctors what food we should be avoiding in the first place then how will adding more food options be the solution to the problem? I definitely noticed some progress with my visit to the hospital this time. Just not in the right areas and I think that needs to change.

The never ending problem:
As I said above, the never ending problem seems to be that doctors aren't getting educated about celiac disease. It's apparent to me and I'm sure it's been made clear to you over the years that they are not educated at all. I honestly haven't noticed any difference with the increase of knowledge among the medical community with celiac disease. I know I'm still so young and haven't experienced as much, but this has been expressed in the gluten-free community multiple times. It makes me believe for now that it will be a never ending problem unless we do something about it. If we keep trying to spread awareness in the medical community about celiac disease then I truly believe one day that this will not be a problem anymore. I don't know if I'm the only one but I believe every child should be tested for celiac disease right from birth. Could you imagine how many more lives would be saved or improved if this was done? Right now that seems like a distant dream...but I know we will get there if we promote awareness for celiac disease together, just one day at a time.

What has your experience been with having gluten-free food available for you in the hospital? Good or bad? Comment below!

7 comments:

jade said...

I don't know how to react with this situation. I tried (visited ;) ) 5 doctors and 3 of them are either unaware of celiac or had a little knowledge about it. One of them asked me ... "Ohh! you can't eat wheat so what will you do now"? I was thinking what should I reply to her question, as at that time I had no idea what I'm going to eat for rest of my life and that's why I came to you. People are not very much aware of such diseases and same I find with the doctors in my place. Sometimes its really hard to deal with my friends too as they have no idea about the gluten. But anyway thanks Miller for your blogs and recipies. Your effort will encourage many of us. So continue on doing the hard work. All the best.

Taylor Miller said...

That's amazing to me how careless and rude some of these doctors are about it. It's like they just treat it like a joke and don't take it seriously which is really sad and annoying as well. Hopefully you start to notice some improvement with your doctors or at least your friends! It just takes time..Thanks for commenting!

dragonfly73 said...

I've been told that it's "all in my head" or if I just start exercising I'll feel better. It's extremely sad that we get these reactions in a regular office, but it's pathetic for this to happen in a hospital. I'm glad to hear that you're feeling better, though!

Taylor Miller said...

That is ridiculous and pathetic to hear anywhere, hospital or not. I am feeling better now though and thank you for the comment!

Casey Cromwell said...

I'm sorry that you had to deal with all of this. Luckily, my hospital has an excellent pediatracts gastroneurologist branch, so I haven't had that issue. With most regular people, though, education is definitely needed! Glad you're feeling better! :)

Taylor Miller said...

Thanks Casey! I'm glad you've had good experiences with your doctors at least! I definitely think more could be done to educate people in general but that will just take time of course. Thanks for commenting!

Michele Herndon said...

My son (13yo) has just started a gluten-free diet after 16 months of neurological symptoms that have left him with peripheral nerve damage and in a wheelchair. The holistic doctor we just visited is fairly confident that these symptoms are a result of gluten sensitivity. When I mentioned this to the neurologists at our pediatric hospital they actually laughed. Then they said they hoped it would help, but they certainly didn't put much stock in it. Even though there is research out there about gluten and the nervous system! Very frustrating. I am going to share your blog with my son. Thanks so much!!

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