Friday, September 20, 2013

The Hospital: Heaven and Hell

I always like to imagine that doctors, teachers, and other authority figures give nicknames to their subjects. The girl who always writes her essays in bright, glittery inks transforms into "Sparkles." The football player who protects the nerds earns the misnomer, "The Big Friendly Giant." If my hunch is right, although I've only been here for one night and half a day, the hospital staff probably calls me "Jekyll and Hyde" since I'm either cracking jokes or crying enough to produce the next great flood.

I've tried to smile at all the doctors and nurses who've walked into my room, clipboards in hand and questions on the tip of their tongues. My medical history. My comfort level. And, my favorite, "How are you doing?" Usually I'll just say, "I'm here" and leave it at that. After all, how great can I be doing if I'm stuck in a hospital bed?

My room for a bit...
Truthfully, not very great, before or during my hospitalization. I can deal with the clusters of wires stuck to my chest like a Frankenstein experiment. I can deal with the IV stuck into the side vein of my wrist. The nose feed, though, is killing me. Literally, I look like a movie's zombie extra whose brain is slowly dripping out through one nostril.

Besides the discomfort, besides the blood, besides all of the anxieties that accompany a foreign object sliding through my nose and into my stomach, the worst part is how wrong this whole thing is. As I laid on the bed crying to my mom from the pain of the nose feed last night, all we could say was, "How did we get here?" How did a fit, soccer-playing foodie turn into a malnourished twig terrified of food?

I should be in college classes right now, watching the second hand of the clock tick closer to the freedom of Friday nights out with friends. Tonight, I should be relaxing in my dorm room, shrieks from midnight surfing expeditions and volleyball games drifting in my window and urgings from my dorm mates urging me to abandon the homework and help pierce Sidney's ears. My biggest worry should be whether or the not the cute sophomore seated next to me likes my personality or my homework grade, not how everyone will react when I walk onto campus with a tube taped to my face.

Modeling my lovely feeding tube

As a celiac, I already eat gluten free while my friends chow down on pizza. I already dodge culinary social events with the footwork of a ninja. And now the doctors tell me a feeding tube will become my newest fashion accessory around my college campus.

That broke me.

Because you know what? I'm tired of being different, tired of my health setting me apart from others. I don't want my identity - the sick girl - to be established before my mouth even shoots out a joke. 

And it will be. By the quizzical stares on campus as I cross the street, white tube shining brightly in the morning sun. By the questions immediately after an introduction. By the judgements of the college peers and professors who interact with me ever day. 

And this fact - the fact that I will be judged by the tube in my nose - is freaking terrifying. "Freaking" be a slightly ironic phrase considering "freak" is the only word constantly fluttering through my mind. But, as hysterical as I feel, in some deep pit of my stomach there is calm. A quiet, reluctant acceptance

It will be okay...eventually

Because I have people standing behind me. My family, including my mom who is hugging me as I write this. My readers, who have flooded my email with of motivation and prayer. Perhaps most applicably, though, the girls waiting for me back at my college dorm

When I suffered a meltdown after hearing about my upcoming hospital stay, they surrounded me in a group hug and postponed dinner to cuddle and watch TV. The day I left, they slid cards and homemade gifts under the door, along with promises to keep me in their prayers. And when I posted a picture of my hospital bed, they made me laugh by linking the music video, "Eye of the Tiger."

A few of my going away presents...
As awful as my recent health troubles from celiacs have been, though, it's also forced me to open up and bond. These girls have seen me at my most tired, my most irritable, my most vulnerable and they have loved me through them. I know no matter what shape I return to school in - weak, strong, or even attached to a feeding tube like a cyborg from a science fiction novel - they will support me. And with that in mind, walking around campus as a tube face is a little - just a little, mind you - less scary.


Have you ever spent time in a hospital? What is your celiac support group? Comment below!


81 comments:

  1. I've been thinking about you. Do they know what is wrong with your stomach? This is Andrea from before. I have a google account now.

    ReplyDelete
    Replies
    1. Thanks for the thoughts! Basically, they learned that I was extremely malnourished and my whole digestive and nervous system was shutting down without the vitamins. I will need to supplement my gluten free diet with a feeding tube for one month at least, but hopefully it will make me feel better. Fingers crossed that I'm going home tomorrow!

      Delete
    2. So just staying on the celiac diet your body got malnourished

      Delete
    3. I think she was/ is so ill that going GF wasn't enough to heal her stomach and intestines in order to get enough nutrition to heal.

      Delete
  2. feel better, casey!! you can do it!! you are such a strong woman!! you'll be in my thoughts and prayers!!! <3

    ReplyDelete
    Replies
    1. Thanks Allie! You always know how to make me smile :)

      Delete
  3. You are so amazing, you can power through this! Just as the sweet note from your friend said "I can do ALL things through Christ who strengthens me" Its true, he is standing beside you, holding your hand... if not at some times dragging your skinny bumm through the sand as you beg and plead for it all to stop.

    As much as it hurts, as much as it sucks, as much as it feels like you are a bug being fried under a magnifying glass in the sun, by some torturous child. You are not, you have made it so far, you have stayed strong.

    You rock Casey, you can do it. And your real friends will stand beside you through this. Who cares about the looks people give you with your stellar new fashion accessory? You didn't put yourself in this situation, you were placed into it by a God who knows you can rock the socks off of it.

    You can do it hon.

    ReplyDelete
    Replies
    1. I loved your comment so much I showed it to my parents so they could see how great the celiac community is. You totally get me and your support gives me the strength to keep plugging along. And yes, I totally will be rockin' the socks of my tube :D

      Delete
  4. It sucks that you have to go through this. I was in and ot of the hospital while in college and I went undiagnosed untill a year after I graduated. It is scary no doubt and it is no fun to be the sick girl, but at least you know what it is and you are working at getting better. It does take work you must get the rest you need and listen to your body. You must eat even though it scares the hell out of you and you must eat nutritionaly dense foods. I too was on nutritional shakes after being diagnosed because I continued to lose a lot of weight and as a former foodie I know this sucks to. But it sounds like you have a great family and group of friends, find comfort in them. Dont wory about hat people you dont know are thinking of you, with your spitfire attitude those people who take the time to get to know you will not think of you as the sick girl.

    ReplyDelete
    Replies
    1. Thanks for sharing your story! I love hearing how other people have faced challenges and succeeded, because it gives me hope that I will do the same. I appreciate the kind words and will keep everyone updated! :)

      Delete
  5. BIG hug from a fellow celiac. Hope you feel better very soon.

    Trude from the Netherlands

    ReplyDelete
    Replies
    1. If the Netherlands are giving me a hug, I know I'll be okay :) Thanks for the love!

      Delete
  6. Keeping you in my thoughts and prayers. (((HUGS)))

    ReplyDelete
    Replies
    1. Thanks for the thoughts and prayers! :) Support is the best medicine.

      Delete
  7. Oh my goodness! Good luck to you! This disease is a beast but you seem strong! I hope this month passes quickly.

    Meg a fellow celiac

    ReplyDelete
    Replies
    1. Thanks for the support! I hope it'll pass quicky as well! Time machine activated!

      Delete
  8. I came over here from the Gluten Dude blog to read your post...life is handing you a trial and it does really suck...but your writing shows that you have a great positive spirit, it may have broken you for the moment but you are already coping and figuring it all out...you have a great attitude and you have great friends who will help you through it which is awesome...I'm wishing you a speedy recovery! i've had celiac for about 14 years now and over the years have figured out that I also can't eat any milk products, sugar of any kind including fruit and I feel much, much, much better...you have probably tested out other foods that might affect you but thought I would mention it anyway just in case, I learned more from other people than I did from my doc ...something else that has helped me GREATLY reduce the severity of symptoms of getting glutened is taking a really good probiotic...now I'm sick for about a week instead of two when I get something by mistake....

    I have never been in the hospital but before getting the celiac diagnosis, I found out I had a chronic form of leukemia, CLL, which is now in remission, my doc thinks its because of the gluten free diet... it takes time but you will heal!!

    ReplyDelete
    Replies
    1. Thank you for sharing your story, and I hope to slowly discover what diet is the absolute best for me as the weeks pass by. I'm so happy for you - a happy tummy is the best feeling ever! And I'm so glad that you are in remission. Hopefully time will be kind for me as well :)

      Delete
  9. Saw your post through Gluten Dude... you will be receiving many posts now from people who you don't know - BUT do understand. College is tough no matter what, but what is clear is that you have an AMAZING support group of your mom and friends. Good friends will protect you like the momma bears that they will eventually be. You will still get to socialize and get out with those that love you. And food will be terrifying for awhile, but stick to whole, basic and nutritious, naturally GF foods, and you will bulk up when your body is ready to accept it. For as much as you lost - you still look vibrant and gorgeous (and that is from a hospital bed - can't imagine what you will look like out on the town!).

    Hang in there, and remember you are in college to learn new things - both about school work, the world, and most importantly - yourself. Sounds like you are on the right track

    ReplyDelete
    Replies
    1. Gluten Dude is awesome for putting up my post - I love hearing from other celiacs/glutenfree eaters and the support system of the online community has been amazing. Thank you for the compliments and your positive spin on the future - I'm smiling too wide for in the morning! ;) And you're absolutely right - college is the time of adventuring. I got that down for sure!

      Delete
  10. My heart breaks a I read this. Keep staying positive, but that being said I know exactly what you mean when you tired of feeling different...it's so OK to break down. I hope you become stronger everyday and regain your health. If you ever need anyone to talk to from one gluten-free college student to another feel free to reach out! embracegfree@gmail.com You will be in my thoughts and prayers.

    ReplyDelete
    Replies
    1. Thanks so much for your wise advice. Finding the right balance between being positive and allowing sadness is definitely hard, so it helps to feel the acceptance of others for both. I will definitely contact you sometime - the more colelege celiacs I meet, the better! ;)

      Delete
  11. I just found your blog through the Gluten Dude.
    I don't know you but I am sending you big hugs.
    Celiac disease sucks.

    ReplyDelete
    Replies
    1. Thank you so much for the thoughts - I always appreciate them! And yes, celiac disease does suck!

      Delete
  12. Hey hon, So sorry this has made you so sick, it made me pretty ill too! I was useless for a year!! I am sending you some huge hugs and love & posting to my fb page so you get even more!

    Danni

    ReplyDelete
    Replies
    1. I can't say how much I appreciate your digital hugs and love! And I love hearing about others' stories - gives me hope that I'll heal soon! Have a great day! :)

      Delete
  13. Hi Casey! Sending virtual gluten-free love & hugs your way. Stay strong & you WILL get better. The gluten-free community is here supporting you. xo Maureen

    ReplyDelete
    Replies
    1. Thanks for the love, Maureen! Yes, the gluten free community has been amazing. So much more than I ever expected. All of your comments make my days so much better!

      Delete
  14. Good luck! Ended up reading your blog after a redirection from the Gluten Dude. Absolutely best wishes for your recovery - hopefully the feeding tube will help you get enough nutrients to start healing. Hang in there - I'm just so impressed that you're managing to keep studying. Amazing! Lou

    ReplyDelete
    Replies
    1. Thank you for the luck - I'll definitely take it! That's my hope too - this tube better be good for something! It definitely isn't easy to keep studying, but that's one thing I won't compromise on. I worked hard to get into college, no one's taking that away from me! :)

      Delete
  15. As a fellow college celiac your story touches me. I was at a University last year that refused to provide gluten free options for me. They forced me to keep my meal plan, but I couldn't eat in the caf, so I had to buy my own groceries. The loneliness you can feel in an environment like that is unreal. I'm the "gluten free girl." That's my identity. I did spend time in the hospital when I was first diagnosed, but never anything as severe. I pray that you are healed and that your story will reach and raise awareness for the entire GF community. God Bless Isaiah 43:2

    ReplyDelete
  16. Casey, you sound like an amazing young woman. Although I don't have Celiac's I can relate to your fears about going out in public with tubing in your nose. I live with lung disease and wear oxygen 24/7. I was certain at first that everyone was staring and feeling pity for me - but they really weren't - not the people who mattered anyway. Mostly what happened was it became such a part of me that people don't really even see it anymore and I forget I have it on. Also people see my strength. I can inspire others to be who they are and live their lives to the fullest despite needing a little "outside help". So you rock that feeding tube and show people that your amazing life goes on~

    ReplyDelete
  17. Tears are flooding my face as I read this. I'm in my early 30s, you see, and while I don't have celiac, I do have several severe food allergies. I was diagnosed in my mid 20s and it rocked me. I too became terrified of food. I was afraid that my allergen would be hidden in everything I ate, so ... I stopped eating.

    I became obsessive about my food, about avoiding food functions. For months I 'survived' on an apple and a slice of cheese a day. Then the fainting spells came, the pounds fell off, as did part of my hair, and I realized I had become anorexic.

    I was once a healthy, active tennis player, and became a shell of my old self. It took a ton of support and a lot of hurdles to jump over, but eventually I got healthy again and got a handle on my food issues. Sometimes they still rear their ugly head, but I know have the tools to beat them down.

    Through it all, I learned that God is good and that He has a plan for me, even with my allergies. I know He has a plan for you too and thank you so much for sharing your story. You rock that tube proudly and flash a smile and know that you are getting healthy.

    ReplyDelete
  18. Casey my heart goes out to you. This disease bites but you will be feeling better soon <3 <3 I was at a really low point in Jan right before my Celiac diagnosis and I am much healthier and happier now. I hope you get well soon <3 <3

    ReplyDelete
  19. My heart is so sad for you, Casey! Hang in there. God gives battle to his toughest soldiers! I know you must be bored to freakin tears and ready to be a normal college kid. My daughter is a soph in college at Univ of Missouri and she has Celiac too. As do I. No one understands your battle like another Celiac Warrior! You can out smart it and just think of the testimony you'll have to help someone else down the line. I'll say a prayer for you and please know I'm sending you a BIG BIG HUG. <<< >>>. If ya want, reach out and interact with me and my readers on my fb page https://www.facebook.com/SeeLeYakSuxs?ref=hl. FEEL BETTER FAST :)

    ReplyDelete
  20. Also coming over to your blog via Gluten Free Dude! I absolutely love the sense of fun and despite the circumstances, your lightheartedness in the way you write - absolutely amazing and spirit lifting. Hoping this HUG finds you home and healthier!! You are young and your will is strong - so all the way from Trinidad & Tobago in the Caribbean - we are not only sending hugs, but lots of prayers and best wishes for a healthy Casey! You give me inspiration as a Celiac!

    ReplyDelete
  21. Hello, saw your blog on Gluten and Allergen Free Expo. I haven't had your experience, but I have been hospitalized for serious IBS before I switched doctor groups. The first ones told me to live with the chronic pain...so bad that I couldn't stand up. The new doctor had to tell me what Celiac Disease was. I have the gene, but the biopsy came back clean. Even going gluten free didn't totally help. I have had to give up soy, most dairy, citrus, dried fruits, soy lecithan, legumes of all kinds, and more foods. I have a friend who has helped me a lot since she had to learn about food issues about a year before me. Right now her body shakes all of the time. They are now thinking it is a mineral deficiency. I have never heard of that either.
    You need to not worry about what others say about your new fashion statement (feeding tube) because it is keeping you alive. As previous entries have posted, God would not have given you this plan unless he knew you could survive. :) Keep positive.

    ReplyDelete
  22. Dearest Casey. You are in my thougts and prayers. I really truly hope that your life will be turned around for the better and soon too. Having celiac disease is not easy. I know. I live with this horrible thing hovering over my head too. You are one rocking chick, as you aren't going to let disease rule your life. You are making the best you can at the monent. You are very admirable.
    As a celiac myself I struggled with all of the horrible symptoms for the better part of 4 years. Just like you, I am a little bit special. My body does not respond to being gluten-free. I have been gluten free for 4 years. Now, today, I am much much better and 'cozI decided to try a diet of only fruits and veg 4 months ago. I had a turn around in a few days of my symptoms. Today, I am able to eat 4 pounds of watermolon and know that I'm not going to be bedridden by terrible cramps for the next week. I enjoy my food again. I don't want to tell you what to do, but if you're even a bit like me you'll be up to trying anything. Please feel free to contact me anytime. Here is my fb link - (https://www.facebook.com/nelazevedomadeline ).
    Love and many hugs,
    Madeline

    ReplyDelete
  23. I saw your story over on Gluten Dude, too...you are doing all you can to get well and take care of yourself right now! I am gluten intolerant and gluten free for 3 years, 2 of my children are celiac. Before going gluten free I had a bowel perforation that nearly killed me, was very sick for a long time and had a colostomy bag for 6 months before they could put me back together. It was the strangest experience having it, but I knew other people had one their whole life...and it was making me better. One of the great gifts of the whole experience was the overwhelming love I felt from people...even complete strangers. You sound like you have a wonderful support system and loving friends...allow them to be there for you. You are on your way to better health! I am a new follower, Casey!

    ReplyDelete
  24. Hang in there Casey! You're doing great :)

    - Alicia at NFCA

    ReplyDelete
  25. I saw this blog on my facebook post because of Gluten Free Allergy Expo and started reading it. My husband has been Celiac since 2009 and he is 48. Thank you for sharing your story! I know my husband has suffered and it's a daily struggle trying to gain weight. I am worried about his 2 daughters and hope the won't get diagnosed. But at least they will know how to live Gluten Free. We will pray for you to get the nourishment you need to get back to being a healthier version of YOU! Also hope you can start enjoying college and I am sure you will help others as you are going through this journey!!

    ReplyDelete
  26. Sending you a lot of support, love, and laughter through this rough patch. Hoping food will be fun again, if not right away, and you have many people around you to help get you over this hump.

    ReplyDelete
  27. Hi Casey! Sending lots of love and positive vibes your way! So sorry you have undergone complications from this. As a fellow celiac who has undergone life complications, I KNOW you will get through this. I was diagnosed with celiac in 2011 but had it for a really long time prior but symptoms weren't bad until then leading to my diagnosis. Unfortunately for me, having untreated celiac for so long, it ended up causing damage to my kidneys and when I was 26, I was diagnosed with kidney failure, had a transplant last year at 28, and because of my immunosuppressant meds still have some problems. It's these types of life tests that make us stronger! Keep fighting and stay strong!!

    ReplyDelete
  28. God bless you! My 2 year old was just diagnosed 9 months ago. She has responded amazingly well to the gf diet. I cried as I read your post because I worry there is more to come for her. But I hope I can be as supportive for her as your mom is being for you. And I take comfort in your strength and positive attitude and pray my daughter will have that same perspective. Praying for you my dear!!

    ReplyDelete
  29. I want to give you a giant hug and tell you that this super sucks, but you are going to come out of it A-OK !

    I don't have celiac, but I have a wheat allergy and it took all of college to figure it out. I spent a month of my freshmen year in the hospital. Sophomore year? 3 weeks. Junior year? 2 weeks. Senior year #1: 4 days. Senior year #2: 0.

    I had to drag oxygen around with me in case I started having trouble breathing. With that and being overweight, people just assumed things. Some people treated me differently. Some told me I should just lose weight (they didn't know why the O2 was with me). It effing sucked. No one wants to be the girl who skips all the social outings and late night diner runs.

    But you know what happened? I met some people who mean the world to me, I graduated with honors and I know work a rewarding full time job. I also was able to participate in social events and got the hang of navigating the food-based ones.

    Being sick in college is one of those times when it is hard to see the forest for the trees - but you are going to get through this. You are going to be stronger, healthier and will have some amazing friends (because the ones who stick with you when you are sick are the best kind of friends). You are seeing all these challenges and obstacles, but there is a path there. Somewhere.

    You will get to have fun in college. You are going to meet plenty of worthy gentleman callers. And your body will heal. There is good, real food in your future.

    If you ever need someone to talk to, or just need a little pep-talk from, I am here.

    ReplyDelete
  30. Casey, I feel your struggles. Though I was not diagnosed early enough to finish college. I had to drop out due to my health and constant hospitalizations. I want so badly to hug you and tell you that life will start looking up. It takes its sweet time, but it will get better. Like you, I am malnourished, 90 lbs, black circles under my eyes, and no energy or strength. I've been GF for 4 years now, since my diagnoses at 26 - but it still hurts to poop and I'm still tired, and I'm still skinny, and I'm still dealing with anxieties of feeling the wretched pains from my head to my toes. My only understanding support is my wonderful husband, who bends over backwards to give me relief and comfort. You are in my prayers. I've got your back! if I can do anything for you, you let me know.

    ReplyDelete
  31. You have a new fan in the Caribbean who is wishing you a quick recovery. Sending you a big hug, you are great Casey =)

    ReplyDelete
  32. Casey, I saw your post via Gluten Dude. . . I feel for you and was where you are, well, sort of. After my freshman year in college I was really sick with my first autoimmune disease. When I came back to campus in August, I was a size 8 only because my HIP bones were a size 8, I was very anorexic looking, I'd been anemic, had blood transfusions and the second things most people said to me (after I said I had been ill) was, "wow, wish I could get sick like that". WORST comment of alleged empathy ever!

    I gave up, before I ever really started, drinking and partying because of my medicine and sleep requirements.

    Blessings to you and the life you now lead.

    ReplyDelete
  33. Hi Casey,

    I hope you are feeling better each day. The feeding tube looks really rad! :) Do they still say that? Nice specs too. Since you are going to be entertaining the hospital staff for a bit, you might like to check out the forum at http://www.celiac.com/gluten-free/

    There are a lot of friendly people there who like to help other celiacs.

    Eating whole foods is a real good thing for us, nothing processed (other than your tube doodles).

    May the Lord keep you and bless you, in Jesus name. :)

    ReplyDelete
  34. Hang in there Casey! I too am a college celiac, diagnosed in 2009 at the age of 15. I am also dealing with some health related problems because of my Celiac, even 4 years later, but I promise you, you'll get better! Funny enough, I actually just did a whole week of a liquid diet the other week because I get so contaminated here at my college that my stomach had had it and didn't feel like absorbing anything I ate! I know exactly what you're going through and it's always comforting to know someone out there, miles away, is dealing with the exact same thing! Stay positive - it seems to go a long way with this disease!

    Sending you hugs and thoughts!

    Tori XO

    ReplyDelete
  35. Via GlutenDude

    Hi Casey! While you are going through a trying time in your life, your writing seems to exude humor and tenacity!

    As a graduate student I can relate to the awkward social situations that our disease can put us in. However, these are not the things we will remember from college. We will remember the friends we've made, the toughest classes we've had to endure and the most interesting classes we were fortunate enough to take. We will reflect on how much we've grown up and recall the unbelievable stupidity of some of our classmates which will later provide for great anecdotes and conversation pieces! We will treasure the adventures of being a college student.

    I wish I could take away your pain, heal your stomach, and fatten you up! I can't. But I, among many others in the Celiac community, can provide you support and encouragement through the process towards recovery. Though you are a fellow Celiac, you are clearly defined not by your dietary restrictions, but by your personality and perseverance.

    Best wishes for you, Casey!

    Hugs and health,
    V

    ReplyDelete
  36. Dear Casey,

    I am praying for you!!! I hope you get better soon. I am a mom of a 16 y/o daughter, who has been dx with Celiac March of 2012. She has been having a hard time with it. She still throws up (a lot) and my fear is that this is a way of life for her!! My husband and I got on to her yesterday that we are afraid she will end up in the hospital (just like you). I am so scared!!! In March of 2012 she weighed 186, now she weighs less than her 13 & 14 y/o sisters, about 120ish!!! I have taken her to many doctors here in Atlanta and can't seem to find the right one to help her. After seeing you story, I am on a mission to find a good doctor! God Bless you, you are an inspiration. I hope you can inspire my daughter Jessica....

    OXOXOXOXOX
    Bridget

    ReplyDelete
  37. Hello!
    I am visiting from Gluten Dude. You are inspiring and beautiful. That tube won't change that. All things can be used for good - even if it sucks. I often use my condition to educate others and teach them about food and illness. When you have the energy for it I bet you do, too. I also have days when a question will send me over the edge of patience. It's a difficult road we walk...more for some. You are doing an amazing job. I am so happy you have a fabulous support system. If that cute guy has an brains he will see how strong you are and how great you look even with that tube :) Heal fast and take care of yourself. I will pray for you.

    ReplyDelete
  38. Dear Casey, I just have to chime with some words of respect and support. I was one of the "lucky" ones who improved when I went on the gluten-free diet, so I never had to face what you are going through now. Though no words do justice, I will throw out another hang in there, and I hope you are bolstered by the magnitude of love and support coming your way through the celiac community. It is such a bizarre disease, affected my so many (as yet undetermined, imo) factors. May your body pull itself together and rise above this soon! Thank you for sharing your experience. This disease is part of who you are, but it does not have to define you. I think we all struggle with that aspect--well, I should speak for myself. I definitely did and sometimes still do. (And why, might I add as a random observation, are so many celiacs "foodies?")

    Sending hugs and positive energy your way …

    ReplyDelete
  39. Praying for you sweet girl! I've felt the pain and hopelessness of this terrible disease/intolerance. My heart goes out to you as you are being care for in the hospital I pray that they will find the answers to heal your body! God is good and he is there for you.... just call on him! I will pray in agreement with you~ Be strong and have Faith! Lots of love coming your way.... God Bless, Jennifer

    ReplyDelete
  40. Hi Casey! You're going to get a lot of hits girl. I also found you through Gluten Dude. Your story hits home for a lot of us, I think. Although I haven't been hospitalized, I came darn close to it. I figured everything out before the Dr's did (Celiac and a massive gut infection) so I got no firm diagnosis, but I'd cut out gluten for pure survival. (Yeah the Dr had me eating the BRAT diet - great!) I was emaciated, and exhausted and couldn't eat much of anything (green beans, carrots and chicken -- literally -- for months) and was still so sick. I'm still skinny, and deal with a lot of digestive problems, but you know what? I'm better than I was a year ago and better still than 2 years ago, and I'll take that any day. Progress comes so slowly for some of us, and patience is difficult. I still have days that are really difficult and I'm finally accepting that. The thing about being so sick is that we develop an incredible well of strength to draw from, not only from our support network, but inside ourselves. Try to remember (even on the bad days) that YOU ARE AMAZING Casey. You are. It does suck to be "the sick girl", I know. But keep fighting for wellness, and you will get there. And when you do, you come to appreciate it so much more than most people ever will. I will pray for your speedy recovery.

    ReplyDelete
  41. Oh sweets, you made me cry...so beautiful and brave! Let us know when you get home! And I am so happy about your friends, celebrate the peeps that got your back.

    ReplyDelete
  42. Casey,

    I too am visiting from Gluten Dude who shared your story and my heart goes out to you!!! I am the mom of 2 Celiac's---one a freshman in college and another one year away. We understand exactly how you feel---being sick and the 'different' feeling.

    I would like to ask you and your mom to please visit http://scdlifestyle.com and please read and read!! There are definite reasons why eating a standard GF diet got you so sick---and it's NOT your fault---and this website explains it all. There is a diet called the Specific Carbohydrate Diet that is much better than a feeding tube and should heal your gut damage enough so you can eventually add back in those tasty GF foods, but in a way that you will know if your body can handle them or not. My college daughter eats this way, and it takes work, but as you know being healthy enough to enjoy your college days and friends is worth it! My son will be living in the same apartment as his sister so he can avoid the dorms and food plan that would definitely get him sick. It's a fact some Celiac's can't handle all the grains and sugars present in regular GF and need the SCD in order to heal. My prayers go out to you for speedy healing!

    Katie

    ReplyDelete
  43. Praying for you Casey! Sorry for all you are going through. Really my heart goes out to you!

    ReplyDelete
  44. Hi Casey - There are a lot of people sending you love on my FB page so thought I should include the link: https://www.facebook.com/pages/Gluten-Free-Mom/111303685566863

    Hope all of this love eases the pain a little.

    Jamie

    ReplyDelete
  45. Casey,
    I was sick really really sick for 3 years before I was diagnosed Celiac. I was told I had Gastroparesis and would need to have a feeding port inserted into my stomach. I was scared to death. After many second and third opinions I was finally diagnosed celiac. I know how scary even the thought of a feeding tube can be. You are such a strong funny young lady. You will pull through this and find your way to getting better. I'm now struggling with the scary world of corn intolerance as well. Food issues can be scary, but as I can see from all of the well wishing comments you have a fantastic support group right here cheering you on.

    ReplyDelete
  46. I just found your blog through Gluten Free Mom. I want to tell you that you are amazing! People who take the time to know your sweet spirit will not even notice the tube and if they do, well then they have an issue.

    I am sending you safe hugs and thoughts of strength and encouragement. My 10 year old daughter thinks it is pretty cool that you are wanting to go back to school and not allow this to prevent you from getting an education. She said that she thought you were pretty, brave, and a role model for her to know that this disease will not keep you down.

    ReplyDelete
  47. Hang in there sweetie. If they would put the tube in your tummy, it would be much more comfortable and safer (plus out of sight) but maybe that isn't possible in your case...... in any case, hugs and prayers......

    ReplyDelete
  48. Casey! Hang in there, girl! I just wanted to drop a note to thank you for sharing so much of yourself with the world. I'm a celiac who was sick for 13 years before being dx and going gluten free. I got better-which I'm so grateful for. But because I look so normal now, my friends have a hard time understanding just how serious Celiac can be for so many of us, gluten free and not. I wanted to thank you for standing up and sharing your story with the world- it is a GREAT service to the invisible illness community and really very brave of you. As someone who is on the outside, I REALLY APPRECIATE YOU AND YOUR BEING SO OPEN. You do whats right for you and know you have a bajillion million people that are cheering you on as you go. -sarah in chicago

    ReplyDelete
  49. Casey, hang in there! I didn't get better on a GF diet either - Doctor put me on regular steroids, which didn't work. I finally got an appointment with a specialist at Mayo Clinic. He put me on Entocort which really got me back on track. I was also told that I had an immune deficiency due to lack of nutrients. Am now taking B12 shots as well. Entocort is extremely expensive, but worked for me. Just take care, I'm sure your doctor will get you back on track!

    ReplyDelete
  50. I, too, saw your post on Gluten Dude. Your story made me smile and choke-up. I was diagnosed with celiac in March. I am 5'3" and was 93 lbs (and dropping) when diagnosed. Your story is one of a strong young woman fighting this illusive disease while helping others do the same. Your mother must be very proud of you (as you should be of yourself). My son, now 14, was diagnosed in January. We don't have any support groups where we live...reading your blog made us both feel good. We'll be thinking of you often and checking your blog regularly.

    ReplyDelete
  51. Hi hon - I saw your post and had to send my {{{{{{{{{{HUGS}}}}}}}}}}} & <3 to you!! This 53 year old celiac knows you can totally kick this trouble's ass. You will get better, you will get stronger and you will SHINE - of this I am certain. <3 Keeping you in my thoughts and prayers!

    ReplyDelete
  52. Hi there Casey. When I was in my sophomore year of college two years ago, my legs stopped working for nine months. Doctors couldn't figure out why even though they did every expensive test they could. I was either on crutches, swinging the lower half of my body forward, or in a wheelchair. And it was not fun. Most of the time I kept a happy face, but sometimes I was just frustrated and discouraged, sure that all of my classmates and teachers just thought of me as "That Poor Girl Who Can't Walk". My legs started working again as mysteriously as they had stopped but then I started having seizures, once again with no obvious explanation. They weren't from epilepsy, so the anti-seizure medication didn't stop them. They happened enough that I had to take a hardship withdrawal from all of my college classes. That was two years ago. I just got diagnosed with celiac disease in January and found out that my seizures and inability to walk were probably both caused by gluten. I'm not saying to be thankful it's not worse (because I know that is not what you need to hear). I am saying that I know, at least kind of, how you feel right now. I have gone through the trying to be cheerful about my condition but sometimes being really depressed. I just want you to know you're not alone. And 30 days might seem like a long time now, but it will be over before you know it. I hope you have a quick recovery and can enjoy more and more foods. And I don't know if you have tried Rice Thins yet, but they're gluten free and made by the same people who make Wheat Thins, and they're amazing!

    ReplyDelete
  53. I came to your blog through Gluten Free Mom on Facebook. I must say, I admire your courage! Being real, being open, allowing others into your life when it would be easier to be silent - you're amazing! I don't have celiac, but I'm very gluten sensitive so understand a little bit of what you're enduring. So what if you have a feeding tube when you leave the hospital and go back to school? It is what it is, and those who really care about you will hardly even notice your new accessory. If others stare or ask questions, you have an excellent opportunity to educate them about the impacts of celiac. As I see it, you have chosen to be an ambassador for celiac to the world. Like I said before, you're amazing! So keep your chin up, stay strong, and go out and conquer. You can do it!

    ReplyDelete
  54. Hugs girl! We are praying for you! You are inspiring! I pray for your recovery and your strength!

    ReplyDelete
  55. Prayers for you for a speedy recovery and a future full of happiness and success. I am also celiac and was pretty sick before I was diagnosed, there were days that I cried so much I didn't think I had any tears left in me. I was lucky that I got diagnosed when I did, my family and friends were pretty worried about me as I was losing so much weight, it has been a few months now and I'm doing so much better and I know that you will continue to get better also.

    ReplyDelete
  56. I was ill too before I realized that my Celiac was causing mental health problems, digestion issues, etc.... 15 months after I've gone very strictly gf, I'm starting to feel almost better... I am working full-time, and taking some classes after work. A year ago I couldn't even fathom getting out of bed for more than a couple of hours at a time. I'm sending you some internet hugs -- and it isn't a fun time, but with patience you'll get better and feel a million times as energetic in the next six months. :-)

    ReplyDelete
  57. Hi, Casey. I heard about you, your story and your blog through Gluten Free Mom and Gluten Dude in the last two days. Thank you for sharing your struggle. I hope that you are feeling better and will be out of the hospital and returning to school soon. My nine-year-old son was recently diagnosed and after six months of a GF diet is feeling better, but still not great. So...back to the GI doctor we go. But I am really beginning to appreciate the GF community and how much I have learned from the experience of others. I wish you a speedy recovery. Stay beautiful and strong.

    ReplyDelete
  58. You've got a tough road ahead of you, Casey. You will make it. Your blog entry here and your note to Gluten Dude show your strength. Tell yourself "I am improving daily."

    To those who stare at you on campus, tell them the tube is the high tech version of the nose ring.

    ReplyDelete
  59. Hi Casey, came across your story through gluten dude's blog and had to comment. I am a lifelong coeliac and also happen to work in the Coeliac Society in Ireland. I want to say that I thoroughly admire your tenacity and your willingness to share your story. We posted this on our facebook page yesterday and again today as I believe that more coeliacs and non-coeliacs need to be aware just how serious a disease this can be. I truly hope that you recover and can continue to enjoy a full and healthy life. I hope also that there will start to be some understanding about this so-not-a-fad diet. I remember as a kid, friends tempting me to try some fig rolls - just to see what would happen (head roll off or something exciting?). You are very strong and brave and I hope you get well soon.
    A fellow coeliac,
    Emma

    ReplyDelete
  60. Hi Casey! I found you from The Gluten Dude on Facebook. I read all the comments on his page, NFCA's page, and now your blog. That's a lot of love! I hope you feel it!

    Looking at you sure takes me back to a difficult time. I started having stomachaches when I was 14 and then all hell broke loose when I was 20 and pregnant with my daughter. At 5'-7" I went from 125 down to 85 pounds between my 6th and 12th weeks. Amazingly, she is fine. After I gained a little bit of weight and she was born, I was back to 87 pounds and feeling like complete crap for the next few years. I had a G tube placed when I was 23, but I wasn't diagnosed until I was 29 - 15 years after my symptoms started. I only had the tube for 6 months, but I had IV's off and on during my pregnancy and when I had the tube a few years later. The IV's were my favorite because they kept me hydrated and let my digestive system rest. Eventually I was only using them at night.

    My weight was somewhat stable for the next few years before I was diagnosed, but would drop for no apparent reason. After I was diagnosed, my weight became normal very quickly and the "standard" GF diet has been a miracle for me. Once your system gets a rest, if you need more food restrictions, just take it one day at a time. There are tons of people who do understand! I am so happy for you that you found out now rather than dealing with pain and isolation for years to come, no matter how much that doesn't ease the pain at this mokent.

    Keep writing in you unique and fun style! And keep your head up. Many great things are yet to come and you are on the right path to enjoying them completely! Sending hugs your way from Gilbert, Arizona! Laura

    ReplyDelete
  61. Hi Casey,

    So sorry to hear about your woes with the recent hospital stay. I have to post this anonymously, as I'm not officially allowed to comment on things as someone who works in a university, teaching students--but. I am. And I have Celiac Disease, too. I just wanted you to know that for every professor or teaching assistant out there who gives you a funny look because of your tube, you've got another one or two quietly tucked away in their offices on a campus somewhere rooting for you, because we've been there, too.

    ReplyDelete
  62. Hi Casey,

    Hope you are getting through this tough time with minimal scarring to your soul! Sometimes life can throw you a curve ball that is very challenging. But as long as you keep your sense of humor and good spirit, you will be fine.

    You are undoubtedly getting another type of education than you wanted: food reactivity 101. I happened to be reading a blog post by the Paleo Mom and I thought of you. It is a great introduction to the science behind how our immune system responds to food. The fact that your body did not respond after you started the GF diet may indicate that you are experiencing "cross-reactivity." There are a number of foods that have proteins that can fool your immune system into thinking that they are gluten. You may find that you have to avoid some of these foods also. Once again, I know that sucks. But the rewards of not having your body reacting to food are so great that you eventually get the thing figured out and start feeling good again! So here's a link to Sarah Ballantyne's excellent post about cross reactivity: http://www.thepaleomom.com/2013/03/gluten-cross-reactivity-update-how-your-body-can-still-think-youre-eating-gluten-even-after-giving-it-up.html.

    Take care and kick this thing in the rear!

    ReplyDelete
  63. Thanks for sharing and Keep writing in your unique style..

    ReplyDelete
  64. Thanks for sharing your valuable information.I found it very useful.Keep posting amazing content like this.
    Medical Hospital Furniture

    ReplyDelete