Sending a Big Virtual Hug to a Struggling Fellow Celiac

feeding tube

Today’s post is all about throwing our support behind Casey.

She did not ask me to do this, but when I read her blog post yesterday (and please read it if you have a minute), I wanted to make sure she knew that there was an entire community behind her as she is really struggling with her celiac disease.

See those pictures above?

That’s Casey. She is in college.

But instead of enjoying the college life and all that it brings, she is in the hospital; with a feeding tube shoved up her nose that she now must wear for 30 days.

As Casey so eloquently states on her blog…

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 in my politics likes me for my personality or my homework grade, not how everyone will react when I walk onto campus with a tube taped to my face.

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.

When I reached out to Casey asking if I could share her story and if she had anything specific she wants us to know, here is what she emailed me:

————————————————————————–

Hey Gluten Dude,

Hope your day’s going well. I’m not feeling 100%, but I’m getting released out of the hospital in an hour or so, so I’m super excited about that!

In the beginning, my celiac story followed the same plot as most others. After suffering from stomach pain, nausea, and weight loss, I went to a GI who diagnosed me with celiac disease. She expected me to bounce back right away once I started my gluten free diet, but unfortunately I’ve always been a little special.

Since my diagnosis four months ago, I’ve lost 20 Ibs and am down to 88 lbs at 5’3″. I still suffered stomach pain, nausea and weight loss, even while on the gluten free diet. First, my doctor tried to put me on an all liquid diet of special nutritional shakes, but my stomach couldn’t tolerate even those so I was hospitalized for three days.

Basically, they discovered that I was extremely malnourished and vitamin deficient, both of which cause my stomach’s continual issues. Because my levels are still so low and I’m not receiving adequate nutrition, though, I have to keep the feeding tube in for at least a month until my weight increases. Via the tube, I will get calories during the night while I sleep and eat regular food during the day. The only bummer is that because I don’t want to take the tube in and out each night, I have to wear the tube all during the day.

I have hope that all of this nutrition will kick start my stomach as I begin to rework food back into my diet after surviving solely off of liquid drinks for two weeks. I’m so excited to get to share my story because, while this was being planned, it was hard to find others suffering the same symptoms. After I posted my story though lots of others began to share theirs. And that’s why I love the celiac community πŸ™‚

Talk to you later Gluten dude! Go gluten free! And go no hospitals! πŸ™‚

Sincerely,
Casey πŸ™‚

————————————————————————–

First of all…for all of those who think simply going gluten-free is the answer to all of your celiac health woes, let this be a stark reminder that it’s not always that easy.

Secondly…here is a personal message to Casey: Hang in there my friend. Life is throwing you a major curve ball right now. You have an amazing spirit about you that not only will get you through this, but that will allow you to come out on the other side stronger because of it. And if that cute sophomore in your politics has an ounce of common sense, he’ll ask you out…feeding tube and all.

Lastly…please send a virtual hug to Casey by leaving a comment below. Let her feel the power of the celiac community and what an awesome bunch we are.

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181 thoughts on “Sending a Big Virtual Hug to a Struggling Fellow Celiac”

  1. Casey – I’m sending you my very best. I cannot wait for you to put this behind you and be able to enjoy college life. Stay strong and just know there are so many people who are rooting for you.

    1. Casey, both of my kids and myself were dx with celiac three years ago. For my son and I, going gluten free made us better. For my daughter, the battle was just beginning. It is a battle she is still fighting. Know that you are not alone, and you are in our prayers. Hoping you make a speedy recovery!

  2. Sending all my prayers and strengthening thoughts to you Casey. And of course a huge hug from this fellow celiac. It’s not fair, and it’s frustrating. But you will get through, somehow, some way. Hang on and hang in there. I’m cheering for you and wishing you the best of days to come.

  3. Molly (Sprue Story)

    I love Casey’s blog and only wish I could be as eloquent, clear-headed, optimistic, and self-possessed NOW as she is her freshman year of college. CASEY: get well soon! We’re rooting for you. With luck your schoolmates will be as mature as you are and won’t blink an eye at your new accessory. But either way, it’s for your health and you’re worth it, so rock it, girl.

  4. With the saucy expression on your face as your model this tube, there’s no doubt you’re going to prevail and keep your kickassness in tact. So sorry you’re going through this – it is truly unfair, and it’s hard enough to live with a condition that makes college not quite what you expected. Remind yourself that this is a short-term treatment that is a long-term investment in your health – not only necessary, but worth it, in helping you eventually live the good life your deserve. Best wishes for a smooth and speedy recovery!

  5. Hang in there, the journey is difficult, just take one step at a time and know that there is a lot of love and even some prayers going up for you to get through this and enjoy all those things that you want to do!!

  6. Sending lots of prayers your way. If your body is as strong as your spirit obviously is, you should be better in no time! πŸ™‚

  7. Sending love and lots of prayers from TN.. Hang in there honey.. SO proud of your courage and spirit…. praying you’ll be quickly on the road to recovery! <3

  8. Oh sweetness. Just remember; This Too Shall Pass! Keep your smile and positivity, that’s what matters the most in hard times. Sending you love and healing thoughts from one Celiac to another πŸ™‚

  9. what a struggle you’ve had, Casey, but i celebrate that you finally found a physician who was savvy enough to diagnose your problem correctly, and that you have a plan to return to the world of good health.
    i truly hope your classmates will be gentle and understanding, rather than bully-ish, about your feeding tube, but however that goes, please continue to hold your head up high and stay with the plan so you can recover. there are many many many of fellow celiacs who are cheering you on!

  10. You are a warrior princess, kiddo. You are an amazing young woman and I send you all positive energy, vibes, loving good wishes.
    If your enthusiastic spirit is indicative of your healing powers, you’re going to be just fine!! πŸ˜‰

    Your situation reminded me of my friend Karen who was once my student in the college I taught at years ago. She rode in a scooter and she suffered from a rare congenital disease that required her to have a trach tube –which she covered with a scarf –and had to block to speak. I thought she was the bravest kiddo on the planet. No one viewed her differently, I promise you… and she finished her degree. She still keeps me updated on email πŸ™‚ She’s 35 now (gosh, I am
    o-l-d) lol

    My friend Lisa started her recovery from celiac with a feeding tube too and she is as healthy as it gets now.It was just a short time. It will get better, I promise you.

    Hang in there, honl!

  11. Hi Casey!
    I am so sorry that you have to go through this! I also have what is called Refractive Celiac.

    Please hang in there…..

    I have researched why some of us do not get better (I am in that group) I believe it is the way companies are genetically modifying food.

    I have had to change my diet again. I can only eat fresh local food. I had to cut out all grains and dairy, sugar, soy, I eat very few fruits (apples, raspberries, peaches) and only few veggies.

    I was having a celiac response to all processed foods and all gmo food.

    I am sending you a *bighug*

    your fellow celiac
    Peggy

    1. I totally agree with you dear, after over 2 years of very little improvement on the gluten free diet, I found the specific carbohydrate diet and eventually the paleo diet. Now I finally have freedom from my symptoms. I too can only eat limited quantities of fruits and dairy. Goat milk seems to be fine for me though.

  12. You hang in there…as my mother always told me: this too shall pass…you will figure it all out and get your body back! Then you will simply be unstoppable!

  13. Big Hugs Casey! I feel for you. I am sick too, don’t know all the why answers but . . . maybe they will someday soon. Hang in there!

  14. Dear Beautiful Casey,

    I am so sorry you are going through this. There is strength in understanding, and I think back to how I found myself in the emergency room several times throughout college due to undiagnosed celiac disease at the time. I was diagnosed with ulcers, ovarian cysts, pancreatitis, etc. Unfortunately it took doctors 12 more years to properly diagnose me AFTER my daughter was diagnosed. I digress. As tough as it is, at least the cause of your symptoms have been pinpointed. Your positive spirit is admirable and will surely carry you through. We are thinking of you and sending positive thoughts for a quick and thorough healing!

    Lots of love from an extended family with 9 diagnosed celiacs.

  15. Hang in there hon, and when you get out of the hospital, do some research on the paleo diet and the specific carbohydrate diet (scd). The scd was created for those with severe digestive diseases. The book is called Breaking the Vicious Cycle by Elaine Gotschall. It has been known to REVERSE crohn’s and other diseases. Essentially you will be giving up grains and legumes and sugar. I know it’s hard, but not as hard as dealing with the pain you’ve been dealing with. Good luck sweetheart!

    1. The Dr’s have already diagnosed her with a nutritional deficiency and are correcting it with an enteral feeding. This very well may take care of things, it often does. She doesn’t need a guilt trip about restricting more things. That will not give her more nutrition.

      1. Gloria is right. and Michelle and Irish heart is right.
        Don’t start with the extra diets, no this, no that and limiting a lot of foods thing.
        Give the feeding tube and nutrients a chance.
        She has enouhg to deal with right now.

        1. I think it’s fine that people are sharing their own experiences. they aren’t telling her to give up the feeding tube. but I think it could help her in the future to know what has helped some others.

    2. Paleo is a bad diet for some people with celiac.

      Apparently, if meat causes inflammation in your family members, and you have celiac, both meat and gluten will make you sick. (Which means Paleo might be a really bad diet for you.)

      Just get better, and when you’re out, keep eating gluten-free and eating what makes you feel good.

      (Big gluten-free cookie hug.)

      Feel better, soon!

  16. Go Casey… you will soon be back on your feet.. and with that positive attitude you will soon be stronger and healthier then your friends.. (Y) πŸ™‚

  17. This is only temporary. Stay strong and remember that you always have people in your corner. My thoughts and prayers are with you. Recover quickly!

  18. Casey,

    Hang in there! I have a daughter who is a freshman in college who battles Celiac too. “Battles’? Yes–because simply going GF didn’t heal her or the rest of our family of 4 either. We got sicker and sicker every year for the first 7 years on our Gf diet. Down to about 6 ”safe’ foods I found out about the GAPS/SCD diet and promptly put all 4 of us on it. It’s been a Godsend and the ONLY reason my daughter is in college today! She was a complete wreck when still eating regular GF. She still has her battles, especially when she tries different foods, still misses work and classes when she is paying for being adventuresome with food, but she is making it. She must live in her own apartment and cook all of her own carefully sourced food, so her college experience is VERY different than most. But that is OK because she is there and living!

    You will too!! Some of us need to make more drastic dietary changes than others, some of us still get very sick while eating the same ‘safe’ and ‘GF’ foods that others living with Celiac can eat and thrive on. But there are LOTS of us out there just like you, willing to share our health secrets and knowledge. Just know you are not alone in your journey!

      1. Sure Louise! The SCD (Specific Carbohydrate Diet) is the original healing diet prescribed to anyone diagnosed with Celiac. It’s very nourishing and easy on the intestines, allowing the damage to heal and the body to finally thrive. It’s not too ‘restrictive’ or too hard—especially when healing takes place and you can finally feel fantastic even while eating! One of the guys who started the SCD site had Celiac SO bad in college while eating the standard GF diet—he ended up in the ER with bowel homeorrghaging! He was also extremely thin and lost all his hair. Here are the 2 best sites for information:

        http://scdlifestyle.com/category/celiac-disease-series/

        http://www.gapsdiet.com

  19. Casey,

    As a fellow Celiac who was hospitalized numerous times the first 2-3 years in college, I’ve got to say you’re doing a great job keeping your chin up! Stay strong, you can do this. It’s experiences like these that shape us as people. Let your strength be a lesson to others that perseverance is key to surviving life, and especially surviving life with chronic illness. You aren’t alone either! Getting really sick and having no one to help forced me to open up to online support groups, and I discovered some wonderful people out there. It’s great that you’re getting that support when you need it most.

    Sending healing thoughts your way!
    Hope you feel better soon!

  20. She is such a trooper! I’m sure it won’t be easy, but she has a lot of support and love from all of her fellow celiac pals! *huge hugs*

  21. Kim64
    Casey, know exactly what you are going through. You are a strong individual and I’m sending you all the positive I have, and a big hug. Never worry what others think as that is a waste of energy, look forward to you feeling good…..and it will happen:)

  22. Casey, I am wishing you a future filled with good health. My daughter and I have celiac and I remember how hard her and I stuggled to keep her GF and healthy during those years. The fact that you have these added issues is heartbreaking.
    As a registered diettian I have seen people requiring tube feedings to regain their health. I know it is hard to feel lucky, but 20, 40 years ago people died from celiac and even today many people are not given the interventions you are and have severe lingering problems for years. You are an inspiration to other celiacs and I know that you will regain your health 100%!

  23. Thinking of you, Casey, as you struggle to regain your health. People don’t always understand the complications that can arise from Celiac Disease; by sharing your story, you are helping to increase that awareness! I will be praying that you heal quickly and can resume the life you should be living fully and soon! Big hugs to you- know that you are not alone- we are all behind you! πŸ™‚

  24. Casey and I follow each other on Instagram, so I’ve been following along with her progress, yet had missed the past few days so I was shocked to see this. Casey, I feel terrible that you are having to go through this. This is so tough! I’m glad you have supportive friends there on campus, and hopefully can feel the support from those of us fellow celiacs as well.
    Also, my advice is to ignore all the folks that will come out of the woodwork to tell you what you “should” and should not be eating and drinking, fake doctors you should see, etc. Those voices can get to you and make you feel like it is all YOUR fault, but it isn’t. Your body has betrayed you and you are doing your best to get it straightened out with the help of your doctors and hospital. I pray that your stomach and body recover soon.
    Hugs!

    1. Thank you so much for mentioning this aspect, Michelle.
      Often, I see people suggesting various restrictive diets, “pseudo-docs”, multiple supplements, herbals, etc….even fasting protocols and bowel cleansings, etc. to newly diagnosed celiacs and it just makes my head spin. WHY on earth would anyone do that?
      Let’s give the GI tract a chance to heal first.

      Her issue is malabsorption and nutrient deficiency.
      It is being addressed and will turn things around.
      Lack of speedy progress is simply because she is newly diagnosed. It is never a straight line, this healing journey.

      It does not mean that she (or any celiac for that matter) has failed at the GF diet or that they cannot tolerate grains, or any number of good, nutritious foods, or they need another diet plan on top of being GF….but that quite simply, the gut needs to heal and the nutrient levels need a boost.

      1. Yes, yes, and yes! I love the points you made, Irish. You are spot on!

        And to Casey, you are adorable. I hope that if I ever have to have a feeding tube I wear it as well as you do. Here’s a big virtual hug from a fellow college student. I can imagine that your feeding tube will be quite the conversation starter. Maybe you’ll get to spread some Celiac awareness (when you’re feeling up to it!) from those conversations. Feel better soon and keep us updated. We’re all cheering for you!

  25. I am a mother and grandmother and also a fellow traveler in the
    Celiac world. Sending a big hug and mother vibes for you to get better. You are a beautiful young woman and thanks for sharing your story. Peace.

  26. Wow! What a story! I always say I didn’t know how healthy felt until I went gluten free. Sorry to hear that isn’t the case for you and hoping that you’ll continue to see progress and recovery! Best of luck to you!

  27. HI!

    Please accept that this tube is short term. Think of it as a fashion accessory and rock it! Wrap it in ribbon, tie bows on it, whatever you can think of to make it stand out! We are all different and our differences should be celebrated. I have been GF for 13 months and am still struggling. The struggle is worth it on the good days. The bad days? Meh, but I soldier on and I want you to do the same. College is a time of self discovery and you should explore and shrug off anyone who can only see a tube and not an amazing woman who only needs it for a little while. The Celiac community is truly awesome and we will be here for you no matter what you need to get healthy – tubes, shakes, a bubble to travel in – we are here for you. GET WELL!!!

  28. Hi Casey,
    Big hugs coming your way!! Stay strong you will make it through healthier!!!
    With your positive attitude you will always be well.
    Best wishes from a fellow celiac

  29. Hi Casey!

    What a journey celiac can be. It takes the utmost strength and determination to fight back every day. You are a wonderful brave young women, who will not let this disease knock you down.

    As a member of the celiac community , we will fight right along side you!!

    Stay strong, and be well.

  30. Hang in there Casey! The Celiac Community is a loving community, and we are all praying for you. Thank you for your willingness to share your story.

  31. Well its a good time to figure out what hottie in class is made of. If he doesn’t ask how you’re doing smack him in the head with some wonder bread & move on.
    Celiac life is full of drama for too many of us used to the 4×4 road of life instead of the easy one. Just learning to rock on is important.

  32. Hang in there Casey! You seem to have such a great attitude and spirit. You are certainly not alone. You have some great friends and family at your side and a whole community of people who are facing similar struggles with this wretched disease. I wish you good health, hope, and healing.

  33. Casey, your spirit comes through loud and clear. Use that spirit to take one day at a time. During those tough days, nights just remember one day at a time, one day at a time and you will come out on the other end a stronger, more compassionate/ healthier woman! Thanks for sharing your journey. Peace

  34. God bless you, Casey…you’ve had a hard time of it, but sounds like you are on the right track now! I am sending good thoughts and prayers your way! XO

  35. Hey Casey,
    Sending you a big hug from Los Angeles. Do some school work, blogging and catch up on all of your favorite shows as they come back. Hope you are getting better each day.

    Best,
    Amy

  36. Stay strong Casey. Feeding tube stinks. Worst is the install so congrats on surviving that. I went through this in 2004. It took a while but my stomach and intestines just needed the break in order to heal. It will get better. Sending absolute sympathy.

  37. Dearest Casey. You’re obviously incredibly brave and that strength will carry you through this experience and bring you to the other side where you’ll be so much stronger physically and able to take on the world with a body that feels brand new. I’ve been there too and almost died. With the tubes and the fear and thankfully the Andy Griffith Show marathon that just so happened to coincide with my emergency operation and hospital stay. You CAN do this and will and one day it will be a memory to look back on and be reminded of how strong you are. I’m so glad for you, me and so many others that we live in a time when Celiac Disease is finally recognized and life is a bit easier for us due to mainstream companies finally getting on the bandwagon and making it a bit easier (like the gluten free Bisquick that allows me to FINALLY eat bread with my eggs in the mornings). Before that, I lost so much weight that I was way too close to being where you are again from just weight loss. πŸ™ I didn’t have the urge to eat because I knew it would be so plain and boring. Not appetizing means no appetite. You’re going to come through this and live a stronger, energetic life. *HUGS* to you!!!

  38. Hi Casey, I hope that you feel better and get your health back very quickly. Even though you don’t want to have to wear the feeding tube for this next month, you will be able to share your story and celiac disease with others who may have never heard of it. I wish you all the very best and am sending a big virtual hug your way.

  39. Get well Casey! You might start a new trend with the nose tube… πŸ˜‰ After all, someone had to get their nose pierced to start that trend!!

    Hope the next month speeds by! Your body will thank you for it and soon you will be strong and full of energy!

    A big Texas sized hug to you!

  40. Best wishes to you Casey! My sister and i both spent the better part of last year in the hospital pregnant with diagnosed Celiac. You are on your way to and healthier you. It takes patience to change your whole life in baby steps. When you get frustrated just remember you’re not alone. Big hugs!!

  41. Prayers & best wishes!! My uncle & I both went through a similar situation. In my case, I found a guy who looks past my conditions, and he & his family have absolutely embraced my difficult-and-sometimes-confusing diet. I’m sure you’ll experience the same thing with that cute guy on campus πŸ™‚ Keep up the great attitude!!!

  42. Sending prayers from Knoxville, TN! Please take the time as you’re recuperating to learn which foods work and which ones don’t. I know what you’ve been through and what you’re going through has been such an enormous struggle. Remember that God is with you through all of this and you will never be alone! Keep fighting the good fight and know that you also have a whole community of fellow celiac friends behind you as well!

  43. Keep your head up and stay positive! You’re stronger than you may think you are at times! You’re an inspiration to those who might be going through this also. To me, you are couragous because it takes a special person to tell others about your story. I hope all the best in your recovery and someday you’ll be back doing college bound activities! You have a bright future! Take it easy!

  44. Good luck Casey! Although I didn’t end up in the hospital I know how difficult the resulting damage from celiac can be, even after going gluten free for a long time. Through a series of misdiagnoses by doctors (all through my college years), I ended up losing an extermely unhealthy amount of weight and was so severely deficient in vitamins/nutrients I couldn’t even get out of bed for days at a time. Needless to say I missed a ton of class and a ton of social activities. It took almost a year and a half before I was able to start absorbing the normal amount of nutrients and vitamins and have an even mediocre amount of energy. But with some patience, things eventually did heal and change for the positive. Hang in there, things will get better in time and you will start feeling normal again! You definitely aren’t alone in this struggle! <3

  45. Super huge (((((((((((HUGS)))))))))))) to you, Casey! WE ALL LOVE YOU and are sending hugs, prayers and lots of good thoughts your way. It’s a big wall to have to jump over, but you can do it. It WILL get better! πŸ™‚

  46. Hey Casey!

    Hang in there! My sister and I were both diagnosed with Celiac during our first years of college. I have struggled with being misdiagnosed several times, surgery, losing 20 lbs, and being continually ill even after being on a gluten-free diet. My sister has battled severe vitamin deficiency and malnourishment that have kept her from classes and all of those fun college activities. Know that you aren’t alone! You’ll make it through all of this. It can be tough! Some ways I made it through college (while still having a blast) included throwing dinner parties for my friends, bringing my own food wherever I went, and letting friends know what restaurants were best for meeting my needs. You find ways to have fun!

    Keep fighting and stay strong! You’ll be in my thoughts and prayers!

    -Katey

  47. Hey Casey,

    I went through almost the same thing, and was hospitalized for 6 weeks. Hang in there. You’re strong, and this too shall pass.

    I still struggle with keeping on the weight and anxiety around that. Make sure when you’re back on you’re feet you put self-care first, and enjoy food –where it’s safe!

    You’re in my thoughts and prayers.

    CJ

  48. Good luck, Casey! I remember just too well how my baby daughter at only 13 months of age had to go through that… But after that month with the tube & the gf diet she put on lots of weight and now, two years later she is just perfect!!! Even above the average weight for her age!!!! So hang in there and bear in mind that there’s lots of us supporting u!!! X

  49. Hey Casey,
    If its any consultation, I received the phone call from my doctor that I had DH and celiac disease the day before I left for my freshman year of college. That was 12 years ago, and I’m now healthy and happy. College wasn’t easy–skipping out on pizza parties and keg stands, eating endless salads and yogurt from the cafeteria, learning about this new disease, being the oddball at parties, etc. BUT I do have to say that the experience made me a stronger more confident person, and I learned who my true friends are. They are the friends that ripped their shirt off to wipe the beer spilled on me at parties, the friends who made me a GF cake for my birthday (in a dorm room microwave no less!), the friends who gave me rides to the local health food store to pick up special groceries, the friends who stuck up for me when someone laughed at me for passing on beer at a party, and the friends who brought me water and GF crackers when I got “glutened” and layed on my dorm room floor throwing up. Hang in there and keep smiling. It gets better, I promise πŸ™‚

  50. Sending many healing your thoughts your way. Your spirits seem high despite what you are going through but I can only imagine that there are times when it’s all so overwhelming. Wishing you nothing but the speediest recovery from your current situation so you can move on to what “normal” is for us with this diagnosis!

  51. Casey! You are outstandingly awesome! With your positive attitude, you will heal and and be able to enjoy life to its full and udder capacity. Including going crazy ape shit in college. I have a two year old daughter that recently got diagnosed with celiac. My girl needs you to thrive and shine! I can tell you’ve got the guts and gusto to do it!

    ‘Celebrate your struggles. They awaken you to what matters most.’

  52. Casey, as a mom of a 20 year old with celiacs, I’m so sorry you’r having to go through all of this. All I can say is hang in there! I can’t send real hugs, but here are HUGS for you and hope that things start to improve for you quickly!

  53. Casey, sending you lots of love from the UK and hoping you’re feeling better soon. It sounds like you have a real fighting spirit and that will serve you well.i hope you get to enjoy college and watch that ticking clock with a smile xxx

  54. I am crossing all fingers and toes for you, Casey! Your friends sound really great so I hope you are back with them really soon and having all the fun you deserve! Stay positive and this will all get figured out! Hugs!

  55. Casey … you are absolutely beautiful with or without the tube. In our family, whenever someone needs any medical thing (from a band-aid on the face to crutches) we like to bling the heck out of it (bedazzle, feather boa, cartoon characters … whatever fits the situation and our personalities). The key to rockin’ any look is confidence … which I know you have in spades to be able to share your story. Best wishes for a happy, healthy college career.

  56. Meant to say this earlier, but wanted to add: My GI doctor calmed my fears when I was struggling to believe things would ever get better (as I was deathly ill upon diagnosis) when he said simply:

    Every year is a healing year. But I say this instead:

    “Every day is a healing day”.
    Just take them one at a time, kiddo.:).
    xxoo

  57. Casey, you and I are one of a kind. I am in college, well supposed to be…..I am 89lbs and 5’4″, been religiously gluten free for 4 years, but still suffer from terrible pains, bloating, constipation, malnourishment, etc etc. After my spring semester last year I fell so ill that my doctors said to take off or end up in the hospital. Now, I’m at home wishing to be on campus (in the apartment I already have paid for) enjoying ‘the experience of a lifetime’; unfortunately I am just praying for food to make me stronger instead of sicker.

    We can do this though. Have faith in whatever you believe. I’ve lost my faith and patience many times. But as Muhammad Ali once said,
    “‘Don’t quit. Suffer now and live the rest of your life as a champion.'” Even a Saint was once quoted saying, “Nothing great is ever achieved without much enduring.” You and I and everyone else suffering will someday serve as testimonies to others who are undergoing hardships.

    Wear that tube with confidence girl(: I am praying that you see a quick return to campus and prospering health.

  58. Hang in there girl! This too shall pass! You will be running around your college campus without a care in the world soon! I agree with Gluten Dude 100%, that cute boy in politics should be asking you out feeding tube and all!!

    Hoping you feel better soon!

  59. Meg and Sophia Hood (Mother daughter both with celiac)

    Sending lots of hugs to Casey! My daughter and I both have celiac desease. We will both pray for you. It took my daughter almost three years to feel better. It may take a long time for you to feel better but there is always hope… Never give up! Stay strong, or as our family likes to say: Be a strong women!

  60. Casey, OMG! You’re beautiful laying right there in your hospital bed! When you recover from this you will be so stunning as to stop traffic on a busy NYC street! What tube? All I see is a beautiful, smiling young woman who is strong beyond belief! Remember, celiac disease tried to kill you but YOU prevailed. Some tough cookie you are. You have already been through the worst part & come out a winner. You are on the road to recovery. Sure it takes time but this didn’t happen overnight & we won’t heal overnight but I feel confident that you have what it takes to beat this devil to the ground & leave it black & blue & groaning, strongly regretting that it ever tried to mess with Casey.
    You GO girl!

    ((((CASEY))))

  61. Wishing you all the best for a speedy recovery! Life is throwing you one big curve ball right now. You will come out of it a stronger person inside and out!

  62. I am picturing you happy and healthy in my meditations. Do that for yourself also. It would be nice if everyone would picture you healthy and happy, it would give more power to it. So come on everyone…get her done! I have been GF for 17 years only because I have a special needs child. I had no idea about Celiac until I accidentally found out I was one. I went to a Celiac convention in L.A. through my sister and her friend. Long story short there was the list of symptoms on the wall. I kept verbally checking off the list. Oh, said a voice behind me…when were you diagnosed? Oh, I said, I’m not…”Well, you are now” he said. Shocked I just looked at him. “You have all the symptoms of Celiac”. He was going to become a specialist in 2 weeks. I was dumbfounded. I actually went to this for my child only to find out I too had to be on this diet. Let me tell you…everything tasted like cardboard back then. There wasn’t a piece of bread to be had that didn’t smell, taste and look like cardboard. It was frustrating. I immediately went on the same diet as my son. Before, I was eating it to show him that other people eat this stuff too…but it was so horrendous that I went on a mission to make better bread. Nowdays there are lots of things to eat and they actually taste like food.
    I understand your frustration as they don’t want to “label” me with Celiac Disease. I took the blood test but I have been on the diet so long it came up not enough to say I have it for sure and they aren’t willing to take another test to prove it. (the State) . So I am in limbo trying to take care of myself. I worry that I too could end up in the hospital just like you. I am so glad your getting the help you need. Soooo glad you get to be with your friends and have a little fun. Keep up the good work and don’t overextend yourself. Hope you get your weight back up little miss 88 pounds…I am 5′ 4″ 3/4 and 88 pounds just isn’t very much. A heavy breeze could knock you over. I will be watching your progress. Please keep in touch.

  63. Hi hon,

    Hang in there! I agree with some of the comments about finding out if your body is intolerant to other foods. After going GF I was still so sick all the time. I’ve now also cut out dairy, soy and sugar. I try to eat organic. I ran into a wholistic nutritionist and she told me to get on probiotics ASAP. She also put me on an adrenal supplement, B12 and magnesium. For the first time in years I feel normal.

    Big hugs!

  64. CASEY! I send you big hug from Mexico. I am also cliac, diagnosed just 5 onths ato, on the oddisey of getting better end relapsing also, YOU ARE IN MY PRAYERS! I send you my WARMEST WISHES AND FEELINGS OR SOON RECOVERY!

  65. As a nutritional therapist, it seems to me that your stomach needs more support in order to break down the foods properly. Just going gluten free is not enough to cure your digestive tract. You are only removing one of the issues. Has anyone mentioned low stomach acid to you? Without the proper amount of stomach acid, you will not be able to absorb the nutrients in the food you are consuming! Make sure you get some Hcl before eating each meal! Believe me, it makes a big difference!

  66. Hey Casey,
    Wish you the very best recovery. My Dad (whose last name is Casey) was like you and needed TPN for almost 90 days after being very Ill for almost 3 years without a proper diagnosis. I can tell you he is fantastic now that his insides function like normal. Hang in there…sending thoughts and prayers. Gluten Dude was a big help to me in learning about this disease.

  67. Hang in there Casey! My scare in the hospital left me at a pretty big crossroads and we are here for you. Mine was nothing as serious as yours but left me very scared and alone. Gluten Dude and the community are glad you shared your story with us. It must have taken some degree of courage.

    Although I am not a Celiac I must practice like one and to hear how much you are struggling makes me want to do better on my eating to maximize my potential. No more taking this curse lightly, it’s time to get serious with my diet. This is for you.

  68. Casey, you are beautiful with and without the feeding tube. I know it will be awkward for you when you first go back to school, but no one will even notice it after the initial sight. This tube will actually give a visual for people to see what Celiac does. Too many think you merely cut out a bit of food and it’s back to normal. Unfortunately, some of us have our guts so messed up it takes lots of time and very carefully selected foods to “baby” it back to working properly. Thank goodness that you’re able to get calories and nutrients in your body to being that healing. If I were there I would bring over a bedazzler and you would have the blingiest tube the school had ever seen! Rock that tube, girl! Nothing says it has to be boring, right? πŸ˜‰

    It sounds that your medical team are really proactive in feeding your body necessary nutrients because normal food isn’t working for you. This is what you need right now. You’re giving your poor damaged small intestine a break and allowing it to repair. You will rebound, rebuild, and get you some curves back after you’ve had a long enough time to heal. We’ll be right here cheering you on, Gal. You represent us all and frankly it doesn’t hurt for others to see that being Celiac doesn’t merely mean giving up bread and cruising on with life unaffected. I know you will go forth and be our best representative. When you get back on solid food, take it as a Top Chef challenge! Bland food isn’t so bad after you’ve been denied all solid food. I will be checking your blog for updates on the foods that are working for you and the ones you have issues with. I think this is an important experiment to share with others.

    Peace Hugs Prayers Thoughts Admiration Courage

    I am sending all these vibes your way.:)
    Prayers for peace and healing ..

    Miss Dee Meanor

  69. Praying that as you gain weight your belly will heal. I have a 16 year old with Celiac Disease and you are a brave inspiration to us.

  70. Sending you a virtual hug…I was recently diagnosed to celiac disease this May. I will pray that you get better soon and that we find a better way to fight this disease. I hope more people become aware of this disease so we can work on finding a cure. I hope that you feel better soon and can continue with your college. You are a strong fighter!
    Take care,
    Andrea

  71. Dear Casey- Your story touched me! You are an inspiration!!!! I’m in Chicago attending the International Celiac Disease Symposium and I know there are amazingly gifted people working hard to help all of us. You can rock the feeding tube!!! You are a beautiful young woman and I can see some fierce spirit in your eyes! Best of luck to you! Keep us all updated! This community never ceases to amaze me. Reading every comment is therapeutic for everyone!!!

  72. Casey…you are so beautiful…trust me no one is looking at the tube! You are doing what you have to for survival…and it is making you a strong person! You are amazing!! Keep going…you are a true example for all…:)

  73. You are such a beautiful girl, I know you will get through this and feel stronger and healthier. We all have a different story celiac or not and from all the comments above you should feel very loved and proud to tell your story, xx

  74. >—-(^_^)—-<
    Big hugz to you from Australia! My 8 yo daughter was diagnosed Celiacs last year. We hope you feel well and full of energy really soon! πŸ™‚

  75. I am Casey’s grandma, and I am sending many virtual hugs to all of you for your thoughts, suggestions, hugs and smiles. She is a beautiful young lady, and strong. Thanks to all of the celiac community for their welcoming and complimentary and helpful attitudes toward others who are in the same boat. God bless you all and give you healing and happy futures like we wish for Casey!

    Love from TX

  76. Thank you for being brave enough to share your story (I still haven’t started blogging about my own or shared it more than with family and close friends). Your story helps many – and I appreciate your openness. I am a triathlete – and my sister who lives far away and cheers for me silently while I participate in events has a phrase that I write on my body to carry her with me. It helps me pull from others when I feel like I just can’t keep going. I will share it with you today to surround you with love and courage, especially on those days you are tired of dealing with it… YOU GOT THIS! I

  77. Casey, I don’t even know if you’ll see this post with so many others, I to have been and continue to struggle with my celiac, I actually work on a campus, I was diagnosed over 3 years ago, I have a sick wife that I have to watch over, I haven’t seen a dr in over a year, I’m starting to have ataxia, where I live the dr’s don’t seem very knowledgeable about celiac so I’m very leery, many times I get very depressed about all of it but people like yourself encourage me to keep moving. get well soon.

  78. Best of luck. I’m getting ready to send my 2 CD daughters off to college in a 2 years. Of course, I’m nervous but I so admire you for your strength and willingness to share and help others.

  79. Casey, Know that my thoughts and prayers are with you.. It seems to me you will come through this with flying colors as you most certainly have courage.

  80. Hey guys! This is the Casey from the post above. I just wanted to let you know that since yesterday, I have been absolutely overwhelmed with the amount of love, support, and motivation pouring in from this site, my blog, and many other origins.

    I want to say that I HAVE READ EVERY COMMENT. I have read every story, felt every digital hug, and cried just as much as you all have said you cried reading my post.

    Right now, I am out of the hospital and recovering with my parents at home. I still have my feeding tube in, and it will stay in until I gain weight and recover. I hope to return to college on Monday after a week of rest and nutritients. And, as many of you have suggested, I am totally gonna bling up this tube – stickers, rhinestones and all!

    Thank you all so much for every comment, and I will continue reading if even more come in. I’m sending a huge, bone breaking, back popping hug to everyone and I’ll continue to keep everyone updated on my blog! πŸ™‚

    1. I am blocking all future links to the SCD site from my blog. And I may go back delete the past ones.

      Enough folks. I have no idea if their “plan” works or not. And I don’t feel like shelling out bucks to find out. Please promote it elsewhere. Thank you.

      1. I wasn’t promoting purchasing anything, simply to eliminate more than just wheat and gluten. There are so many Celiac people who haven’t gotten better by eliminating wheat or gluten alone, so I thought it was informative to anyone suffering still after doing the gluten free diet, to try to eliminate even more stuff from their diet. Maybe I read the article (link) wrong, but my take-away is there are a lot more offending foods…. Do you have a different forum for Celiac people to go to to share ideas and other things that have worked for them?

        1. And, I’m not sure this stuff has anything to do with Casey personally, (I’m not a Dr) only that her situation reminded me of that article I read a while back and thought I’d share it for anyone who comes across this blog, to try it out if needed. I guess when I see Gluten issue blogs, I jump at the chance to share info. I honestly thought there was a lot of free information that people can try out at home that has nothing to do with purchasing things from the website. Sorry to offend. i do see your point about it being about Casey only. So, I’m sorry I put the link on this blog…..

          1. Hi CD,

            Nope—no website, no blog. I’m just a stay at home mom who has devoted the last 8 years to healing and homeschooling my 2 kids πŸ˜‰ No time whatsoever to blog or anything…just enough time to research and find ways to heal with whole foods.

  81. Glutendude,

    I have NO affilation with those guys–it’s just that their site has the best information about SCD and NO purchase is necessary to read there! PLEASE educate yourself about SCD—which is NO different than your advice to quit eating pacvkaged food. It’s vital info for many who don’t recover, like Casey and MANY others, on a regular GF diet. It may not be cool to link to their site at which they do sell things, but the info there is the best so I think you are making a huge mistake to discount them.

    You, of all people Glutendude, know that regular GF does NOT work for too many. If you delete vital information links that can and have and are helping so many, you do a great disservice to this varied community! Perhaps you could do the research yourself on why SCD works for Celiac and post some non-commercial links.

    1. Two points I’d like to make:

      1) This post was all about throwing our support behind Casey. It was not a call for alternative suggestions on how to make her feel better. We’ll let the doctors handle that right now.

      2) I am skeptical of any site that charges people to feel better. Maybe it works. Maybe it doesn’t. Maybe they are just trying to get links to their site for SEO purposes. I honestly don’t know. I just know I’ve seen enough of them on my site to make me suspicious.

      1. You are assuming a lot about Casey ” not recovering”.

        She was recently diagnosed –it’s only been 4 months!–and she needs some medical/nutritional intervention, that’s all.

        It’s a scare tactic, IMHO to keep badgering the point home about “celiacs not recovering”. It’s just not true.. That SCD website says “research shows anywhere between 30%-60% of Celiacs don’t get better on a GF diet.”

        No scientific citations were provided.

        1. ‘Only 4 months’? ONLY!? If she was my child, I would be furious because either she got a wrong diagnosis of Celiac and had a different condition or I would correctly assume she was still eating gluten! Ending up in the hospital is not usually what happens after 4 months after removing a poison from your diet unless the poison is not 100% removed.

          I’m sorry you find the SCD diet so offensive, but it’s the ONLY thing that has allowed my family to thrive. And I WILL share my experience and knowledge for that reason alone. I guess those of us that need something more than Standard GF and must go to SCD would still be sneered at in a room full of Celiac’s—kind of like attending gluten eater family functions and having to sheepishly eat your own special foods……

          1. Katie…it took me 2 years to begin to heal. Everybody is different. I’m glad you found something that works for you. Honestly, I am. But I’d prefer if you don’t promote it on my site anymore. Thanks.

  82. Casey, if I can help in any way, the dude knows how to find me.
    I wish you a speedy recovery, honey.
    You’re going to be all right. I promise.
    hugs, IH

  83. My ordeal happened when I was a little kid. But I was diagnosed when I was 46 years old, in 2006. I have gone through vasculitis, lupus scare, H1N1, Flu Type A, pneumonia. I had to go to the hospital long time ago with chest pain( I was scared, thinking it could be cardiomyopathy, like my father). But thanks God, I am a
    warrior and I can tell you that you also can fight this and win. I still have reactions to different foods like, soy, corn, potatoes, tomatoes, seafood, apples, peanuts, celery, tuna, etc., but, as I said, I am a warrior. Your best defense? Education. Read books( like “Celiac Disease”by Dr. Green), articles and attend conferences about this disease. I think learning a lot about my disease may have saved my life.
    I am sending you healing energy and God bless you always.
    Mari

  84. Casey, you are an inspiration! I know it is tough going, especially right now, but your optimistic outlook will see you through this. Big higs and best wishes from Calgary Ab Canada.

  85. Hi Casey,
    A big GF hug for you all the way from Sydney, Australia! I’ve had an NG and overnight feeds before, too. Not fun! But I rocked the tube out in public and you can too.
    It seems like your doctors are really on the ball, but if you are still struggling to gain weight or progress is slow, perhaps ask them if they think you might be hypermetabolic. Often after a period of malnutrition, the body’s metabolism kicks into high gear and it can require a hell of a lot of calories just to maintain weight let alone gain at a reasonable rate. Doctors can sometimes greatly underestimate the amount of energy someone requires to gain weight in these instances. I know of a girl whose doctors put her on a 2400 cal diet to gain 2lbs a week, she ended up needing 6000! That’s a lot of food, but there are ways to increase the density of a meal so you get more bang for your buck. Good luck!

  86. I’m sure, with your positive attitude, and all the great celiac/gluten intolerant community folks sending positive energy your way, you will be on your healthy path soon. Keep rocking the tube until you can toss that sucker. I hope you have a lot of on-deck friendship support as well this month. Good luck putting some weight on.

  87. I’m late arriving here, but wanted to chime in anyway, as it’s never too late to send words of support to a fellow celiac.

    Go for it, Casey! With all the support around you, and your great attitude, you’re in good hands. You are young, and ambitious from the sound of it, so this is no sweat. A blip on the radar. Dare I say, you’re an inspiration to us all. Thanks, a lot, for sharing!

  88. likely your gut microbiota is toast…last year after antibiotics i couldn’t tolerate water or aloe vera or anything. (i had remained gf.)

    then i got some HMF Replete and recovered really rapidly. now i ferment my milk with it so i don’t have to buy it anymore.

  89. Casey! Hang in there girl!!! You will be stronger because of this. I was diagnosed during my college years as well so let me know if I can help you with anything. Even if it is a frustrated vent session.

    Also, I can’t imagine how you must be feeling about walking around campus with a feeding tube BUT it is an incredible time to tell your story and show how strong you are to all your peers. You have a wonderful personality and spirit and it will take you far during this hard time.

  90. Best wishes to Casey on her road to recovery. Thank you Gluten Dude for continuing to bring “gluten free” issues to the forefront! I’m going to forward her story (with credit to your site) off to my followers in hopes of getting Casey some more supporters!

  91. Hey Casey! I hope you start feeling better very soon! As you can see, you’ve got a HUGE support system and lots of new friends in the Celiac community who are rootin’ for ya! Stay positive and know that this too will pass, and hopefully will get easier!

  92. Hi Casey! I hope you start feeling better very soon! As you can see, you’ve got a huge support system and lots of new friends in the Celiac community who are rootin’ for ya! Stay positive and know that this too will pass, and hopefully will get easier.

  93. Hang in there Casey. There are a lot of us out here who feel your pain, and wish you all the best. Get well soon……godspeed.

  94. Casey, you are beautiful inside and out. May you heal and gain weight as your doctors hope…and may everyone you interact with on campus support you and help carry you through this extremely difficult time. What strength of character you have. All my best, from a fellow Celiac

  95. Sending a big hug to you, Casey. I, too, suffer backlash from having Celiac disease. My iron levels continue to be low, and some of my vitamin levels are low. I also have a few illnesses/diseases associated with Celiac disease, which makes like extra *fun (sarcasm)*

    You are a strong woman, and I am praying for you! Also, my family and friends send their love!

  96. hi Casey:
    I have also experience hospitalization last winter for 2 weeks, I am down to 100 pounds 5,9 male 24 years old despite a gluten free diet, suffered liver damage and etc. right now my diet is still consists of only rice and chicken and other veggies, I was suicidal back then, actually still if I had gluten or other food, I will be suicidal . but you just have to be strong, it will get through for sure, celiac patient from my personal near death experience are all truly under-recognized group of people, who at the same time are tougher, they are all warriors just to stay one more day on this earth. I will salutes with tear and all my emotion to everyone of them especially those with serious condition because we fought hard

  97. Hey everyone. I don’t know if anyone will see this comment or read it, but I am Casey from the story above. I was scrolling through all of the replies, praises, motivations and prayers that filled this page a year ago, and needed to say how big of a stamp all of these words left on my life. I am now (hesitantly) recovered, and officially in “celiac remission.” I’m healthier, happier and having an amazing sophomore year thus far. To all those who wondered if I read their comment with so many others – I did. To all those suffering from the same struggle to heal – you can. And to all those who took time to encourage someone they didn’t even know – you make a difference.

    Casey πŸ™‚

    @

    caseythecollegeceliac.blogpost.com

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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