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  1. 1

    Pixie

    This story absolutely breaks my heart.
    I’m so sorry you have to go through this, and I’m so sorry nobody is offering you any respect. Celiac is hard enough to go through with support, its even harder with minimal support. But to have everyone just disregard your health like that… I can’t imagine how much of a struggle it is for you.
    As much as I hate to say cliche crap, keep your head up. One thing I’ve learned since being diagnosed is that I have to become my own advocate. It makes you stronger. It makes you healthier. Find new friends. I know it sucks, but if these people are so cruel to you about an illness that you can’t control… they don’t deserve you, and you deserve so much better. 2 friends who care are worlds better than groups of people who don’t. Try not to let people drag you down. Focus on what you need to do, focus on staying healthy, and screw ignore the rest of them. Or try to. It’s hard, but they really aren’t worth the second thought.
    This story just makes me so sad and so angry for you.
    I wish there were more that I can do.
    Lot’s of love, hugs, and support.
    ~Pixie

    Reply
    1. 1.1

      Laura Bachner

      Sorry to hear you are not getting both the support and understanding you need dealing with this. I know the feeling well. I thank goodness that one of my bff’s is also a celiac so she can also relate. My family on the other hand is a different story. My own sister think’s I’m a hypocondriac. My nephew doesn’t want to hear anything about it.
      I get that they went from having a “normal” life to having to hear about it everyday, which on their end can be annoying and a pain in the ass to have to hear about it everyday. On our end, it’s also annoying and a pain in the ass to deal with it every day. It’s your body and you have a right to feel respected and heard. You may have to buy and prepare your own food. You may want to buy a slow cooker with a timer so when you get home from work, YOUR dinner will be ready.
      You will have to be your own advocate in regards to this. Join support groups in your area to gain more friends who at least are supportive and know where you are coming from.
      As for your family, if they haven’t been to a nutritionist or your gastroenterologist, have them go and learn what this is all about. If for no other reason, there is support out there. Especially FB groups.
      You are not alone!!!!!

      Reply
  2. 2

    Amanda

    Sorry to hear that you have been treated so badly! Especially!! By your family. Hang in there and know you have support, even if it’s from afar. Stay healthy, it will get better.

    Reply
  3. 3

    Molly (Sprue Story)

    Aw, kids suck sometimes. To borrow a phrase from the LGBT movement: it gets better. Some people will never understand, but as you get older most of your peers are going to mature (not to mention start to experience illness for themselves, since a whole bunch of disorders tend to start up in the early 20s—not that I’d wish it on anyone, but it’s a fact!). I’m 23 and my friends do NOT act this way. So to second Pixie, keep your head up and stay strong!

    (And maybe focus on helping your family to understand that it hurts your feelings when they don’t help you out with food you can eat. Sometimes people just don’t realize what messages their actions or inactions are sending. Hopefully if you sit down and discuss your feelings with your family, they’ll get it.)

    Reply
  4. 4

    Christen

    I can’t imagine what you’re dealing with. Celiac is hard enough without all the torment your peers and family are putting you through. I know, as it’s currently 1am and I believe I’ve been glutened. I’m writing to you as I’m unable to sleep between trips to the bathroom, tomorrow is going to be a rough day at work!! Anyway, I digress…. Keep your head up. You can do this. And if all else fails, know that we will always have a spare bed with your name on it and a gluten free kitchen I’m willing to share. I’ll even let you have your own bathroom… I totally get the needs of a fellow celiac. :)

    Reply
  5. 5

    Kelly

    This story angers me, as well as breaks my heart. To the author of this life: Keep your chin up, put a smile on your face and rise above these people. Even us adults learn after diagnosis who our true friends are and who are not – and what family members “get it” and which ones don’t. People can be extremely cruel out of pure ignorance – it shows their true colors. Don’t let them defeat you, smile and just walk away. As for the school, if you have a 504 or an IEP in place, they MUST respect your disease, your issues. If I was your mom, let’s just say the school wouldn’t want to see me coming…. I have a Celiac daughter as well. At first many didn’t understand but now, her friends watch what she eats closer than I could (she’s away at college and will cheat unfortunately). Stop and look at yourself in the mirror. You said you go to school. You said you work. You said you volunteer. Who cares how you eat? You’re an amazing person for being so young and doing all you do. You are far better than them and I’d wager much of their actions stem from jealousy. You’re different, you’re unique, you’re not a wallflower like them. Let your colors shine, you’re beautiful.

    Reply
  6. 6

    Linda

    My heart breaks for you. I, as an adult, have been through similar things. People don’t “get” it. They don’t understand that celiac is REAL and that even if I follow my diet I STILL have autoimmune disease! My family says it’s not even a real condition.

    Those 2 friends, they were your only real friends anyway. This is a filter. You now get to easily filter through a lot of a-holes pretty quickly. It’s hard to grasp that attitude about it, but if people don’t care that food can make you really sick you do not need them in your life.

    Your family, well they need someone to shake them a bit. I’m guessing they don’t really understand how awful celiac is, both in symptoms and how isolating it is.

    I want to applaud you for doing the diet at your age. I discovered my celiac as an adult. I have a child with autism who also has it and is on the diet, my other 2 are teens and wont even attempt it. I am certain they have it. They have so many of the symptoms that I had/have. It IS hard socially. I wish I could say or do something that would make it all better…hang in there. It will get better and you will find people with it and you will learn to live with it more easily. I’m only 18 months in to the whole lifestyle change. It’s getting better. It will for you too…I will say that when you go off to college you need to have a food plan in place. The cafeterias aren’t likely to be able to meet your needs. If you plan well, once you are out in the bigger world it will get better.

    Reply
  7. 7

    cindy tennessen

    I’ve just been newly diagnosed celiac. I was treated like that years ago by my dad when I decided I wanted to be a vegetarian. I FELT better when eating like that. Probably because I ate more rice and less wheat pastas with stir-frys. I live in a different state now and can’t imagine what he will say/act like when I drop the celiac bomb on him. Is there a teen celiac support group in the area? A local hospital or walkin clinic may know. Look up Dieticians in the yellow pages/online. They should know of some groups. I wish you luck and please know you aren’t alone, we all are here for you!

    Reply
  8. 8

    Celiac Mindwarp

    That just sucks, no one should have to out up with so little support and and respect.

    I hate to say it, but it is true that you are going to have to be your own best advocate now. That is tough when you are young. It took me until forty ahem something to really take charge of my diet and health. You may need to take responsibility for every meal in advance if your folks can’t be relied on. It is frustrating having to do that much planning, but that may be what’s needed.

    I am hoping that you might find a way to get across to family how important your diet is, and that everything is made harder both by the celiac itself, and by all the extra stuff you need to deal with to keep healthy. Show them some websites, leaflets etc. Try and do this when you are ok and in control. Keep the messages coming, calmly and clearly. My best way of doing this is taking control of my stuff and leading my family, as calmly as I can ‘ this is what I need, and here is why’.

    Maybe you can get a doctor’s letter explaining any accommodations you might need (like a bathroom stop, geesh) for organized trips ans school, college, work etc.

    People are tougher. Those peers are so desperate to fit in they can’t stand anything different. If it wasn’t the celiac, they would probably pick on something else. Try and find places to go with good people, carry on rocking up with your own food, see if there is a support group for celiac in your area, go to each other’s houses, do stuff not too focused on food.

    Are there people on the volunteering side you could hang out with?

    You are going to end up so far ahead of peers in life lessons, in control of your own life and able to stand up for yourself. I know you’d probably rather not have to, but better to learn it now than in your 40s like me (I stand up for myself on most things, but health was the hardest, as I stand out in work and social situations. I am getting better at it, and my family and friends are accepting in now).

    I really wish you all the best, hope that today is better than yesterday, next week better than last week

    Mw

    Reply
  9. 9

    Bernie

    That is just so wrong on all levels – my heart goes out to you. It would be good to think that karma could deal with the sad and ignorant (because that’s what they are) people who have made you more ill and unhappy, but in the meantime, let’s focus on you being happy and well.

    I am glad that you are taking responsibility for having your own food available to you when you are out. As Pixie says above, being strong, and being your own advocate is very important, and it will serve you well in other things you want to do in your life. If you have any organisations supporting celiacs that you can join, I hope this will give you some new friends who have your back, while you make others more local to you who are worthy to be your friend.

    I was diagnosed somewhat later in life, and I have to say that my friends have been brilliant – always looking for places where we can all go and have a good time. It doesn’t have to get in the way.

    And as for the adults failing to stop for you post-glutening? I could just set loose with what I believe to be described as a whole can of whooop-ass on them… Cruel, appalling, shocking behaviour.

    Wishing you much better things from now on. Big hugs,.

    Reply
  10. 10

    Wendy T

    I don’t know what to say that will help top people from being jerks, but I will say that the longer you stick to being gluten free, the better you will feel. I know it’s exhausting right now, and people don’t understand, they just think you’re being picky. The friends who give you a hard time about eating your own food at restaurants etc are not the people you want to have around you long-term. They’re narrow and immature and have no interest in understanding what you’re dealing with.
    And they pick on you because you are vulnerable.
    You’re WORTHY of being healthy. Don’t let anyone tell you otherwise. As for school trips, that’s a legal issue. If you have been officially diagnosed with Celiac disease, they MUST make reasonable accommodations to your DISABILITY. That may mean pulling over to let you use the bathroom while on a field trip. There’s plan that can and should be filed with the school called a 504 plan.
    I know you wrote this when you were exhausted. Take deep breaths and know that you are most definitely not alone. There are thousands of us out here and we understand.

    Reply
  11. 11

    Janet

    Frankly, I don’t understand people like that. Here’s what I would suggest. If the people who are around you are so uncaring and unfeeling that they won’t find it in their hearts to support you, then find people who will. Look for support groups. There are online Facebook groups you can hang out in and bloggers who will sympathize and give you advice (not to mention their followers who often have experiences similar to yours). See if there are any support groups in your area of other people, like you, that you can turn to. If there aren’t any, maybe you can try starting one yourself. There are organizations like the Gluten Intolerance Group (http://www.gluten.net/). They have local branches in about 30 states.There’s the Celiac Sprue Association (http://www.csaceliacs.info/) who, again has local chapters around the country.

    Here’s where the internet really is your friend. The number of resources for celiacs has been increasing exponentially over the last couple of years. I was diagnosed with non-celiac gluten sensitivity and have been 100% gluten free since March 2010. At first it did seem so hard and I cried over the “loss” of foods I once enjoyed. But over time, I have found that it gets easier. I’ve not only learned more about cooking for myself from scratch, but come to love the variety of what I *can* eat. The only thing I miss sometimes is just the convenience of being able to go into a grocery store and pick up anything off the shelf. But I remind myself that those foods, even if I wasn’t gluten sensitive, are still bad for me, full of sugars, GMO ingredients and chemicals I shouldn’t be eating.

    I have pinned some of my favorite gluten free bloggers who post hundreds of recipes that make you forget that gluten was ever anything you craved: http://pinterest.com/navoff/favorite-gluten-free-bloggers/

    I also have a list of some of my favorite paleo bloggers. Paleo is a naturally gluten free, whole food approach to eating. A lot of people who are into paleo came there by way of celiac disease or some other autoimmune disorder: http://pinterest.com/navoff/favorite-paleo-bloggers/.

    Reply
  12. 12

    mrscamby

    This is just heart breaking. Are there any support groups in your area that maybe would help you connect to some people you can relate too? Kids are just stupid and if they are threatening to gluten you they are not worth your time or effort.
    Where do I begin with your parents? I had a therapist tell me a long time ago that no one says you have to have a great relationship with your parents. Not all parents deserve respect and unfortunately it sounds as though your parents do not.
    I am so sorry that an already difficult situation is being made that much more difficult by the people around you.

    Reply
  13. 13

    Stephanie

    I am so sorry for what you are going through. Others are right that it will make you stronger and help you find your true friends, but in this moment, that is little comfort.

    I don’t know what kind of relationship you generally have with your parents, but I would encourage you to let them see what you wrote. Maybe they don’t need to see the comments, but they should see how you have expressed your emotions. As a mom, I’m sure I unintentionally hurt my kids, but when I truly get a glimpse of raw emotions, there is nothing I won’t do to make it right.

    Hang in there and find some support online or in person. I like meetup.com for finding people going through what I’m going through.

    Reply
  14. 14

    Rebecca

    There has been a lot of great advice given here already, but can I just say that I wanna backhand your parents. What on earth! I have 3 kids and would never in a million years do this to any one of them. Can I adopt you?! HUGS HUGS HUGS to you and know that there are people who don’t know you who love you just the way you are!!!
    Much Love,

    Reply
  15. 15

    Ellen

    I’m so sorry your life has changed so much and so suddenly. That is always hard, and it is even worse when you’re a teenager. Everything has turned upside down, and you probably feel all alone in this. Hang on to your two true friends, and please try to remember (harder than it sounds, I know) that this phase will pass.

    You will always have Celiac Disease, but you will eventually be able to surround yourself with people who are good to you – at least most of the time.

    I’d best go before I write a dissertation here… I tend to get carried away.

    Please know you have folks here who care about you and with whom you can talk… about anything.

    Reply
  16. 16

    Harpreet Kaur

    Take a deep breath and I hope your find some comfort in the fact you’re not alone. I was diagnosed with celiac disease 2 years ago. I came to Canada 3 years ago. New country. New people. New University. Pretty much new everything. 1 year of living in distress, of being told ‘oh it’s just the weather change’, ‘oh! you’re a PhD student it’s probably just the stress’ etc etc etc… is all it took for my celiac disease to worsen my health, put on 30 lbs on me, and finally make my doctor take me seriously. It took another 6 months for me to diagnosed. I was happy to be diagnosed. To learn I only have to change my diet. Little did I know at the time it would result in me losing the new ‘friends’ I had made in this new country. I didn’t lose 1 or 2 friends, I lost all of them. Why? Because I couldn’t eat what they were eating, or drink what they were drinking. Because I wasn’t going to let Celiac Disease destroy me anymore. Because I took a stand and said NO!
    So, I completely understand what you’re going through. It feels like the end of the world, like ‘what the hell did I do wrong?’ ‘why can’t they understand?’
    A few months of wandering alone and accepting that perhaps I won’t find friends who understand me, I met a new group of people. And from day 1 they were open to the idea of me getting my own food or just hanging out with them not eating what they are. It’s been almost 2 years now and they are my family. I’ve been to several potlucks where I get my own food, or if one of my friends is cooking he/she’ll ask me what precautions should I take, which ingredients are safe for me and which aren’t. Honestly, I don’t even feel bad about losing those old ‘friends’. My new family rocks! They are my strongest support system, here in my home away from home.
    And that’s why I can say with confidence, you’ll find your group of friends that understand you, that appreciate you for you and are your strongest support system ever! Don’t lose hope and keep your head up :)

    Andy Grammer’s helped me through some of the roughest days, his song ‘Keep your head up’ is my personal CeliacDisease anthem :)

    “I’m seeing all the angles, starts to get tangled
    I start to compromise
    My life and the purpose.
    Is it all worth it,
    Am I gonna turn out fine?
    Oh, you’ll turn out fine.
    Fine, oh, you’ll turn out fine.

    But you gotta keep your head up, oh,
    And you can let your hair down, eh.
    you gotta keep your head up, oh,
    And you can let your hair down, eh.

    I know it’s hard, know its hard,
    To remember sometimes,
    But you gotta keep your head up, oh,
    And you can let your hair down, eh.

    Only rainbows after rain
    The sun will always come again.
    And its a circle, circling,
    Around again, it comes around again.”
    -Andy Grammer

    Reply
    1. 16.1

      Cat

      Harpreet…good to hear your story. Both my daughter and I are Celiac and she’s also in University. It’s tough enough to get through – simply living day to day is hard enough with this crappy disease.

      If you’re in Toronto, let us know. We’d love to meet up for lunch. There’s a great little joint in Kensington Market, Hibiscus – gluten free, vegan – the works. Great food and cheap!

      Reply
  17. 17

    Taylor - GlutenAway

    I’m 15 and I’d love to be able to help you or talk about this to help you out. There’s really nothing I hate more than hearing other kids my age with Celiac get messed with about how they eat. It’s absolutely ridiculous to me that people are so arrogant and bully people over something as simple as food. I’ve had many people do it to me over the food I eat.

    When I went to a school dance last year, I spent the dinner with a group of people that ended up putting garlic bread in my face the entire dinner and would make fun of the fact I couldn’t eat it. This went on for an entire night and ruined my entire “school dance experience. ” I know exactly how you feel when dealing with others that make fun of how you eat. But you want to know how I told off those people that made fun of me? I told them “That it’s pretty pathetic that the only thing they can find to make fun of me about was food” From there on on gave no reaction to anyone that made fun of me and made them look like a joke for being idiotic enough to make fun of something so stupid and simple.

    If it’s alright, I would love to get in contact with you just to give you advice from another teen or just to help you in some way. Just let me know, I’d be glad to help! -Taylor

    Reply
      1. 17.1.1

        Taylor - GlutenAway

        No problem. I would be happy to help her any way I can. I know sometimes having someone closer to your age to relate to can feel better.

        Reply
  18. 18

    thetxlady

    There are no words to fully express how upset it makes me that 25 years since my high school days kids & parents STILL are doing stuff like this!!

    Let me start with church group not showing love & support. You are a perfect being in the light of god, perfect just as you are regardless of flaws you see or anyone points to. Church adults are still human with all the flaws that come with that. The love of god is a personal & individual thing, embrace that in whatever form helps you most, not what religion says you should feel or think. Pray not to change others, but to discover your own understanding & find support when its needed.

    Parents…I was issued a set that didn’t “get me”, emotionally, harmed me in ways I’m still fixing & physically I still carry the scars. If one parent “tries” more than the other, sit down & talk. Hardest part is listening to what they say without arguing!!! “You’re so difficult with your weird diet & demands of special food” really is cruel, but its how they honestly feel. It tells you there is a barrier you need to work around by cooking for yourself, buying food that’s safe for you & doing whatever you need to care for yourself. Its not fair, its not the life & family other kids have, but its “your cross to bare”. You’re right it sucks, but focus on what you can do…get & fill out your own 504 forms for the school & get doctor to sign.

    Talk to your school councilor about bullying that is against federal law & actionable under the americans with disabilities act. Food allergies aren’t a joke anymore than stealing a kids wheelchair is!!

    School nurse may be able to help with support group, sponsor an allergy awareness club you start, or direct you towards medical help.

    Talk to your doctor!! Get referred to a GI specialist that understands celiac. My parents thought I was being “dramatic” about severe foot & leg pain. I was in AGONY to the point of sitting on the floor in public & refusing to move because of pain. I demanded a foot doctor & was told I wouldn’t sit down for a week if he found nothing…I said FINE. Well foot doc found 35 fractures in my feet radiating from quarter shaped circles (parents dropped a dresser on foot months prior) & an ankle fracture that was cutting my achiles tendon in half requiring emergency surgery. After visual medical confirmation I wasn’t making up the pain or “just being a dramatic teen” they FINALLY got on the correct side of the problem…the one that keeps me healthy!
    Also talk to doc about depression meds. Yes I know “uncool & crazy” but here’s the deal…if it helps you to stay happy when those around you are jerks. If it helps you stay healthy not stressing people you can’t control. If it makes your life better so you can plan graduation & how to get out on your own…why not at least TRY it?

    I had to go to year round school to graduate early & get out of my house. The pain, suffering & cruelty almost consumed me…it is only now as an adult that it makes sense. If my family had been different I wouldn’t have the “strong back bone”, sense of justice & empathy for others that has been so valuble. It doesn’t make what happened ok, or my parents people I understand, it is what makes me who I am in spite of them. I am a success in spite of them, happy in spite of them & respected in spite of them. 25 years hasn’t made them understand me any better!! I sometimes still curse the lazy stork that dropped me with “the wrong parents” because ones that love me, respect me & support me have to be out there. The catch is, having those parents wouldn’t make me who I am.
    “I am the way, the truth & the light” -GOD

    Reply
    1. 18.1

      Kim Jorgensen Gane

      I believe there is a contraindication for anti-depressants and teens.

      H5TP is a natural supplement that can be obtained from a health food store, is available in 50mg or 100mg (I would recommend the lower for starters), and helped me tremendously just to have a little more positive outlook on every day. A friend of mine basically saved her teenage daughter from a frightening path by trying it with her.

      This is an example where you need to be your own best advocate and do your research. Google anti-depressants, Google H5TP, and be responsible for checking to see whether or not these are good recommendations for you and your needs.

      There is also a strong link between gluten intolerance (including Celiac disease) and depression, so the better you do with your diet, the more that issue is likely to take care of itself.

      http://articles.mercola.com/sites/articles/archive/2011/07/04/can-eating-this-common-grain-cause-psychiatric-problems.aspx

      Reply
  19. 19

    Darlena

    People suck sometimes, kids, adults, seniors. Some grow out of being sucky and others just double down and make a career out of it. Regarding your parents: Can you ask your family doctor to talk to them about the seriousness of CD? It’s not likely going to help them grow empathy but maybe an awareness. Regarding your friends: It is a filter. Life gives you challenges and through those challenges, you find out who your friends are (and aren’t). Unfortunately high school is just a tiny ecosystem that it’s hard to find friends outside (except in the virtual world). Luckly, high school ends and you can determine your own ecosystem.

    Much love from the Ozarks.

    Reply
  20. 20

    Lynda Abeyta

    I am so sorry to hear about all the jerks in your life. You can come live at my house and I will take good care of you. If you life in Northern California just let me know and I will come get you. Your family doesn’t not deserve a wonderful daughter like you.
    I know the internet has a wealth of information and you need to get in with a support group online if not local, where you can all talk about how to deal with this. Maybe you need to talk to your dr about coming to your school and help educate EVERYONE about Celiac DIsease and how it affects everything in your life. I am praying for you and knowing that life will get better. —Lynda

    Reply
    1. 20.1

      Ellen

      This really can be a viable option. I had two young ladies come and live with me while they finished high school. (At different times) They needed a safe place, and I had room – they are my unofficially adopted daughters. Ask… you may find that there are more options than you think.

      Reply
      1. 20.1.1

        Beth

        I agree, my first thought was go & live with someone who respects the fact you need to be totally gluten free & will help & look after you. Do you have a sympathetic relative you can stay with? A
        It’s been mentioned that maybe your doctor could talk to your parents & give them some info to read about coeliac disease. If after that, your parents are still acting this appallingly, then get the hell out because they don’t deserve you & you deserve better! good luck :)

        Reply
  21. 21

    Joy P

    That sucks. That really sucks. I am feeling angry and hurt for you right now. I acknowledge that right now you are going through a really hard time, but I also want to encourage you that it will get better. That said, some people are just jerks and nothing will ever change that.
    I’m sorry that your family is giving you such a hard time about this. I think it’s hardest when it’s your own family that is being jerks about it. I don’t know how long you’ve had your diagnosis, but your family might need some time to adjust – however, that doesn’t make their actions right or even remotely acceptable. How they are treating you is wrong.
    Don’t give up. Keep advocating for yourself. Find groups on Facebook or the like to help support you. “True Celiacs and their Parents” is a great one. It is a great, private (only people in the group see posts) place to vent, ask questions, rant, learn, and be supported. There is support out there.

    Reply
  22. 22

    Donna

    Dear Young Celiac, I am so very sorry that so few people understand your predicament! You DO NOT deserve to be treated that way! Know that you can always come here and vent, rant, cry…whatever you need to do to feel better!!!! We will always be here for you! I noticed when I signed in that there were already TONS of replies to your email to Dude!!!! That might give you an indication of how many people have Celiac Disease and know what you are going through. BUT…I will say that any “Friend” that would gluten you on purpose is not the kind of friend that you want in your life. As for your parents…I am really at a loss for words and I am so very, very sorry about that. THEY should be the people that are the most supportive out of EVERYONE!!!!!!! For now you need to stick to the TWO people that are supporting you! As for life being overwhelmingly difficult…it is always going to be difficult, but as hard as it is to believe…it will get a little easier being a Celiac!!!! Good luck and gluten free hugs coming your way!!!!!!!!!!!!!

    Reply
  23. 23

    Jersey Girl 2

    I sat here for a full minute just flabbergasted and not sure what to say b/c it makes me so sad and ANGRY on your behalf. I have a teenage daughter with celiac. If any of the things that happened to you had happened to her, there would be hell to pay. First of all, your parents should be your first and best advocates, and it seems that they don’t get it … at all. But they are still RESPONSIBLE for you. They have to feed you. If they can’t or won’t, report them to somebody (I don’t even know who … maybe ask at school).

    Secondly, make your school support you. Every year we get a giant stack of papers to fill out b/c the school is required by law to provide GF food for her. (She prefers to bring her food, so we never filled it out, but it is there). Are you the only person in your school? If not, maybe you can band together.

    Lastly, I’d find a local support group. If you live in or near a city there should be one. There isn’t one where I live b/c it’s pretty rural, but that’s where the online community can be so fantastic.

    If this happened to someone I knew, I’d get on a plane and go yell at all the stupid people. If everyone around you is not understanding how this works and the seriousness of it, try to find one adult … at your school, local hospital, celiac support group … who can be your advocate and explain celiac disease to your family, school, friends, church group, etc.

    Reply
  24. 24

    Jersey Girl 2

    For the rest of you out there, this girl’s story made me wonder something. If someone puts rat poison in someone’s food, they get arrested for assault, attempted murder (whatever, depending on the situation). If someone intentionally puts gluten in a celiac’s food, is there any legal recourse? Has anyone heard anything like this? This isn’t the first post I’ve seen where people have non-supportive friends and families. Some of them are passive-aggressive and just don’t clean up their crumbs and what not, but what about those situations where people actually feed a celiac gluten on purpose?

    Reply
    1. 24.1

      Darlena

      Or, what if your doctor stalls on changing your meds because he doesn’t want to believe that Synthroid might have gluten?

      Reply
      1. 24.1.1

        thetxlady

        My MD & functional med doc both refused me thyrosin “because I’m just on the low end of normal”, yeah like .10 from “officially being sick”. Finally got angry & found @ natural food store raw thyroid by natural sources. Has changed my life!!! Have more energy, weight is coming off & feel “normal” for the first time in years!!

        Reply
      2. 24.1.2

        Else

        FYI – I take Synthroid without any problems, and have had the celiac blood tests redone since being on it and all was fine.

        Reply
  25. 25

    KateJ

    I know how you feel. I was diagnosed at 38. My Dad refuses to get it.

    He claims that because I am well now, I “should” be able to eat gluten.

    He says that if I ask questions when I eat out, I am stupid. Unfortunately, as he is deaf, he cannot hear how loudly he expressing this opinion. (And my academic record, although not Mensa level, would suggest that I am not stupid.)

    He gets angry if my Mum buys gluten-free biscuits if she knows I’m going round there.

    Fortunately, the rest of the family has done a bit more research.

    Reply
    1. 25.1

      thetxlady

      This is as rediculous as saying he can’t be deaf because “he LOOKS normal”. Pretty sure that arguement won’t be well received, but the logic is the same…rediculous.

      Reply
  26. 26

    Daniela

    Dear beautiful you….
    I know how you feel and I admire your strength …
    I was diagnosed at the age of 36 and you can imagine the reactions I was getting from my family too…They could not understand why all of a sudden I have become “this person” …My husband was getting embarrassed to dine out with me at restaurants, etc…However, this isn’t about me now..It is about all of us who have been given a journey and have a story to tell…Not easy but certainly makes us stronger..
    I have also learned that the friends that used to be my friends and no longer are…just made a place for new and wonderful souls to touch my life now…and I am ever so grateful for that now even though it was really hard at the time…
    I have faith and believe that you will get through it…We are only given challenges we can face and overcome and I have no doubt that you will too…
    It is hard when you don’t have the support of your own family but this only means that you just need to take responsibility and just do what is best for you…Prepare your meals..and show them you are strong enough to do it…You are not going to live with them forever (which is a good thing, believe me )…
    Sending you healing thoughts and big Angel hugs :-)
    Love and blessings ..and chin up! I know you can do it x

    Reply
  27. 27

    Camille

    And this is why I found gluten dude…

    Take Taylor ( you rock, by the way) up on her offer to talk to you, it helps so much just having one other person who understands what/why/how you feel!!

    Keep coming back here – most of us sign up for the threads so there have been days where I have just felt miserable and gone out to a previous blog and typed in a question or statement and within hours I had incredible support and ideas coming my way! It helps so much.

    This GD community is amazing – USE us.

    And finally, things will change — when things are really really bad they are going to change and when things are really really great they are going to change. Tomorrow will be better.

    Reply
    1. 27.1

      Taylor - GlutenAway

      I’m a guy…haha, but it’s alright, I get that a lot!

      Reply
      1. 27.1.1

        Camille

        That is so impressive!! You are a cut above. :) There are not many guys out there like you. That being said, I have to stop thinking Swift and start thinking Lautner!! :)

        Reply
        1. 27.1.1.1

          Camille

          And I just signed up for you web-site via email!

          Reply
          1. 27.1.1.1.1

            Taylor - GlutenAway

            Hahaha, I don’t know why but I found that funny. Thanks for the compliments though, and I appreciate you checking out my blog.

            Reply
      2. 27.1.2

        Jersey Girl 2

        Ooops! I said “girl” too in my post. Apologies!

        Reply
        1. 27.1.2.1

          Taylor - GlutenAway

          Haha, don’t worry about it, it’s happened a lot more than you would think.

          Reply
          1. 27.1.2.1.1

            Jersey Girl 2

            But now I know about your awesome blog! (And once a person goes to that, it is obvious that you are NOT a girl). My daughter, now 16, has had celiac since first grade, so we are kind of the “go-to” people for newly diagnosed friends. They always ask us where to go/start. There have been a couple newly diagnosed teens (which I think is the WORST age to be newly diagnosed) and I think it is SO HELPFUL for them to have access to other teens’ experience. Now I can send them to your page too!

            Reply
            1. Taylor - GlutenAway

              Thanks! I think it’s awesome you try and help newly diagnosed people and give them tips on where to go and start off. I really appreciate you including me now, that would mean a lot.

              Reply
      3. 27.1.3

        Kim Jorgensen Gane

        Ha! I’m reading from the bottom up, and I wondered if *she* was the Taylor I referred to in my comment. Too funny! I KNEW you’d be right on this, Taylor, because that’s just the kind of *guy* you are.

        Attitude is everything, and Taylor’s is among the best and it’s why I put a link to his site on GlutenNaziMom–I’m SO very happy to have connected with him on Twitter, and will shout it to the mountaintops.

        Here’s a post I wrote on my other site that is completely unrelated to gluten, but that talks about attitude and how in this 13th year in particular, ALL things are possible, even teaching your family by your forgiving example a thing or two about compassion, and about attitude especially:

        http://www.westcoastposse.com/2/post/2012/12/whats-the-secret-to-making-2013-your-best-year-ever.html

        Reply
        1. 27.1.3.1

          Taylor - GlutenAway

          Thank you so much! I really appreciate your compliments Kim!

          Reply
  28. 28

    Connie

    Oh, honey, I’m so sorry! I remember feeling the exact same way when I was your age, only insert type I diabetes in for celiac.

    The good news: as other people have said…it really does get better. I know it doesn’t seem like it, because at the age you are, its hard to think long term. Hold out for college when you gain control of your life. Even if you only go to community school, you can get a job, work on moving out, and have more control over your situation.

    The bad news: you have to hold out for college. It takes 4 years of high school to get there. You’ll have to put up with some of the worst stuff in your life, but I can tell you that it will make you a stronger person and you will fare better in the long term that they will. Many of them will even apologize to you when you get to your reunion about what asses they were ( I know, it happened to me). Age has a lot to do with causing people to think more, and right now, they just don’t get it.

    That said:
    1. Bring the fact that your parents don’t support you up to your doctor. They need to be kicked in the pants for not taking the best possible care for their child. If that doesn’t work, start talking to everyone who will listen – school counselors, teachers, nurses, doctors. It may be that you need to put some pressure on them to make it happen.
    2. It sounds like you’ve already got this down, but be your own advocate. Buy protective covers for your food. Bring a lockbox when you go to events (I’m not kidding, I had a locked container I brought to sleepovers for my insulin because the kids would threaten to steal my syringes and shoot me up with too much insulin so I would go into a coma and die.). Don’t be afraid to ask about the items at restaurants – but you may have to say you’re going to the bathroom, pull the server aside and change an order. Explain the situation to the adult and they will react much differently than the teens around you.
    3. Find your real friends. I made it through high school with the same group of 4 girls, and we still talk to this day. We’re real friends who can be there for one another when tragedies occur as well as the happy occasions – not like those fair weather friends that don’t take you as you are. 2 friends is an awesome start and you will slowly find more.
    4. Learn to build your own armor. I made being a diabetic part of who I was. You don’t accept it? I don’t accept you. You tease me about being slightly overweight? Get out of my house. I put on my armor every day and even though some days it got to be too heavy and collapsed, most of the time, it did its job. By the end of high school, I was much more confident in myself than my peers and had an idea of who was going to grow up to be an ass and who was not. That visualization, though, of every day putting on my armor along with my clothes helped me through in the meantime.
    5. Learn to do things outside of school. Find a swim team. Find a knitting group. Go to the library. Join a club through your park district. Find a support group for autoimmune disorders or celiac. Interact with as many people as you can outside of school – they will be the ones to help get you through the day.

    I really wish I could give you a hug through the Internet. I know exactly what you’re going through. Hang in there. I know what we’re all telling you is platitude-like, but it really does get better as you get your own life started.

    Reply
  29. 29

    Cate

    I am so sorry you are going through this. My daughter and I suffer from sever gluten allergies as well as other life threatening allergies. She is a teen as well. It is tough going out with others. My daughter is lucky that she has amazing friends. I am glad that you have the two kind ones in your life. I cook a ton, and have found GF substitutes for almost anything you could want to ever eat. My recipe box is quite extensive. I would be more than happy to help you by giving you recipes, or product tips or whatever you may need. Also, I know that coming home and having absolutely nothing to eat sucks. I am allergic to so many different things that there are no “convenience” foods. What this has taught me is that I have to have a little stash in my car and at home just for me. Not the kids or husband, just me. Sounds like your family doesn’t have a clue. So, unfortunately you have to be the adult here. Go to the store and get some GF granola bars. My daughter says the best ones are the Glutino Cherry. She also said the other favors suck, so beware. She can’t have nuts, so there maybe better options that have nuts in them which would be even better for sustained hunger control. Speaking of nuts, if you can have them, they are a wonderful GF snack to have around! You can even make some homemade granola for yourself just be sure to buy GF oats.
    Please contact me if you need more info or advice or help. I’d be happy to help. If your Mom needs help maybe understanding or cooking for you I’d be happy to email her as well. Just let me know. Many hugs!

    Reply
  30. 30

    Angela

    I’ve lived in you shoes. I’m still there with my family. I’m going through it at work too. I still hate it. But I have accepted it.
    I’ve known about certain non-gluten food allergies for 15 years now, gluten was added five years ago. It gets easier. I’ve learned to enjoy being special. I’ve walked out of restaurants and cafeterias because they cannot cater to my allergies. I have let people walk through my life because I knew they couldn’t handle my allergies.
    Growing up with food allergies does make you grow up a little faster, a little more street smart, a little more aware of your surroundings. You’ll feel better eventually, even if it means you live multiple states away from your glutened “toxic” family. I do.
    Nobody said this life was going to be easy, but eventually it’ll be worth it. Wake up to a new day, every day. Have faith that you were put here to be an advocate for people with struggles like you. Believe in yourself, because most days, that is the only thing that matters.

    Reply
  31. 31

    Claudia

    I am so sorry that it is your family that is not supporting you and that is just criminal to me. Like some of these other people have said–you must ADVOCATE for yourself. Find a support group on Facebook online or in your community. Don’t let them get to you. Your parents seem to be in denial. It appears like you are getting abused by your family. Ultimately you may need to tell someone that you can trust. Bullying is abuse. Please get help.

    Reply
  32. 32

    Kim Jorgensen Gane

    Oh, Sweetie. I’m so very sorry you are struggling with this overwhelming issue, especially at this stage in your life, when everything seems SO big and SO important…it will be years before you understand that it’s just something you have to get through and learn from, but you will. Promise.

    I’m more sorry than I can say that you don’t have the support of your family. It’s hard on them, too, and sometimes misplaced anger at feeling helpless will be directed at you. This isn’t fair, but it’s human nature.

    The best thing you can do is to be your own best advocate. Take control of your own meals, ask to go to the grocery store with your mom or whomever is typically responsible. You have a job, which is great and very admirable, perhaps some of your own money could be earmarked for those food items that are most important to you, that your family hesitates to spend the extra money on. Maybe this isn’t fair, but if it’s your reality, then it will feel better to be in control and just roll with it than to focus on feeling bad about it.

    It amazes me every day what little most people actually know about good nutrition. Your family might be in that boat. They might not have a clue where to even start, because they don’t understand what good food and good nutrition consists of, let alone identifying gluten. Start watching Food Network. Learn for yourself what a beautiful variety of foods is available that is naturally gluten free. Learn how things are prepared. Teach yourself to appreciate the beauty and the variety that exists for our palates, just waiting to be discovered. Learn to enjoy the crunch and texture and colorful beauty of new foods. Deep colors that come from nature are your friend.

    I’m so sorry that some of your old friends (who apparently were never friends at all) are not taking this well. Lucky them, they don’t have to. And neither do you. Move on. Embrace new friends, like amazing young Taylor @GlutenAway http://glutenaway.blogspot.com/ … he has the most amazing attitude, and I know that he and his mom would be happy to be part of your support system in this battle, as would I, at http://www.GlutenNaziMom.org .

    Being diagnosed might not feel like it at the moment, but it is truly a gift. It allows you to have a plan, to be in control of your life, if you choose to be. You might want your mom or your family to take care of this for you, but you’ll feel SO much better if you do that for yourself. Take care of and love yourself the way you wish others would. Honestly, this is a great lesson to learn now vs. finally figuring it out in your 40s.

    You never know how strong you’re capable of being until you get to one of those crossroads in your life. You’ve reached out to a caring, supportive community via GlutenDude, who’ve all been where you are now, and some days we’re still put right back there by some thoughtless individual. But we pick ourselves up, dust ourselves off, maybe we make ourselves some GF brownies, and we tackle the next day. One foot in front of the other. YOU will be one of the experts someday soon, and you will show the kindness you see here to someone else who is struggling.

    Best of luck to you,
    –GlutenNaziMom

    Reply
  33. 33

    Lena

    If you are under 18 (depending on where you live) the fact that your parents are not providing food you can eat is considered child abuse and you can call a children’s hot line in your area to get help.
    The threats to put gluten in your food by your “friends” is assault. If they do it you can charge them. Let them know this is not a joke, it is illegal. It is also called Bullying which in many places is also illegal. If your school has a zero tolerance policy you should speak to your principle, if not for yourself then for all the other people with Celiacs coming after you.

    While it is hard, stop asking to be accommodated and take charge, DEMAND to have the necessities of life. Take action if it is not provided. This is hard, I know. Sometimes it is easier if you think of all the other kids with celiacs who will benefit from your actions. It is always easier to work for others then for yourself.

    Reply
  34. 34

    Melanie - GlutenGuruApp

    After reading this, I couldn’t NOT comment! I don’t have issues with gluten but I’m one half of a team that’s trying to build an app to help people who are in your situation. I’ve seen my 13 y/o nephew go through hell with his health, and also with issues that shouldn’t even exist – people not understanding that Celiac is a very REAL condition.

    People can be cruel, ignorant and uncaring and I sincerely feel for you. You deserve so much better. Take advantage of the amazing online gluten free community. They are truly a warm and genuine group of people.

    Also, do you have a blog? Writing can be an excellent way to vent and can also help bring awareness to the friends and family who take the time to read it. There are a number of free blog sites you can sign up with. Or, if you’d prefer to have your own domain name, we’d be honoured to buy it for you and help you set up a WordPress blog. We can even host you for free.

    You have the courage to embrace your condition and OWN the heck out of it, regardless of what anyone thinks or says! And we’re all behind you a million percent!

    Email me anytime at glutenguruapp@gmail.com :)

    Reply
  35. 35

    Holly

    I wonder if you could call child protective services. Maybe a foster home can be found for you with a celiac-friendly family. Look at all the offers you’ve had from this forum, already, to care for you. A mother who won’t feed her child is an abomination to any other mother!

    Reply
  36. 36

    Molly (Sprue Story)

    Yikes…can’t help but think the first step is to sit down and have a reasonable dialogue with her family about how you felt when you came home tired and were hoping to find dinner ready and waiting for you. Emotions run high when we’re tired and hungry, especially when we’re already stressed about other stuff!

    Although of course I don’t KNOW your family or your exact situation, I wonder if it is an overreaction to jump to suggestions of child abuse/neglect. It’s not very nice to respond to a stressed-out kid with “Chill out,” but it’s also not necessarily abuse! I got the sense you were feeling upset about a particular instance, rather than having your needs regularly ignored by your family. If the former is the case, I really recommend you put together your thoughts on a) how their reaction made you feel, b) how you wish they could respond in the future, and c) how you can take steps to help avoid the situation happen again (like, can you help with food prep or at least coming up with meal ideas/a shopping list?)—just as a way to show that you are open to cooperating, even if it does seem unfair to have to take an active role in your own food prep at your age. Most importantly, stay calm and be honest about your feelings!

    Reply
  37. 37

    Molly (Sprue Story)

    Sorry, with your* family, I mean. (The misplaced “her”s are rampant in this comment thread, aren’t they?)

    Reply
  38. 38

    Kate

    That sucks! Sorry your family is being so unsupportive. I can understand teenagers being jerks, but the adults in your life have no excuse at all.

    Maybe it would help you to meet other young people who are dealing with celiac. I don’t know if there’s a support group in your area that you could attend – but the website http://www.celiac.com includes a special area in their online forum for teens and young adults to talk about what they’re going through, and it might help you to connect with other kids who are having similar experiences.

    Link is here:

    http://www.celiac.com/gluten-free/forum/24-celiac-disease-teenagers-young-adults-only/

    It’s a cliche – but keep your chin up and remember that what you’re going through now is only temporary. Good luck!

    Reply
  39. 39

    Janet

    Joshua Weissman is another blogger who might prove helpful. He’s 17 years old and has reclaimed his health through a whole foods approach to diet (all gluten free).

    His website: http://slimpalate.com
    His Facebook page: https://www.facebook.com/SlimPalate

    Reply
    1. 39.1

      Kim Jorgensen Gane

      Great lead!!! Checking out his site, too!

      Reply
  40. 40

    Jackie

    I hope that when you get down you read this comment string and realize there is a wonderful support network available to you in the celiac community. You are not alone and you did a great thing reaching out. Definitely take Taylor and anyone else you particularly connect with up on their offers to help! Sometimes our biggest triumphs come out of our worst pain.

    Reply
  41. 41

    Lisa

    I am sorry you have been treated so badly! Oh my heavens if you were my daughter I would move heaven and earth to make sure you got the proper food! As for me I try not to make a big deal with what I can or can not eat! Most people are to narrow minded to understand how sick it can make you if you eat the tinniest bit of gluten. You need to take care of yourself and only you can control what goes in your mouth. It is not an eating disorder, if they are treating you like you have an eating disorder that is very sad. One trick I use If I go to a party where food is being served I make sure I have eaten before hand, and act like a social butterfly and never sit down! I try to keep something on me that I can eat at all times. I make sure to think out of the box with food. I realize you may not have the ability to shop for food, could you make a grocery list for your parents? Could you help your family with the cooking? Keep your head high, take no crap regarding this!!

    Reply
  42. 42

    Jersey Girl

    “So, I guess we are who we are for alot of reasons. And maybe we’ll never know most of them. But even if we don’t have the power to choose where we come from, we can still choose where we go from there. We can still do things. And we can try to feel okay about them.”
    ― Stephen Chbosky, The Perks of Being a Wallflower

    Will pray for you, young celiac.
    XO-
    Jersey Girl

    Reply
  43. 43

    Steph

    This piece absolutely breaks my heart. I was diagnosed with celiac disease in my late teenage years. Since this was almost ten years ago there was even more ignorance about celiac than today (or at least that was the case in my world). I experienced many situations similar to your’s, albeit less severe. It is a time when you are still trying to define yourself and here comes celiac giving you a label that isn’t your fault and you can’t change. It is so difficult to adapt to the new lifestyle and becoming your own advocate is hard enough, let alone if you do not have a support network.

    I have some choice words for your supposed friends and family but I will keep my language clean. Just know that what they are doing is not right and you deserve better. There is nothing we can say or do to make that go away but I hope you will use this situation to find strength and wisdom. You will forever have this label and this lifestyle. It never goes away and while you do get used to it I don’t believe it gets easier. For 9 years I have felt slightly on the outskirts of people who can eat food without questioning it through and through. That feeling has never gone away for me (nor do I want it to).

    One thing that I always wished I had done when I was first diagnosed was find a support group. My nutritionist recommended it but my teenage stubbornness said otherwise. I felt so alone for such a long time that I really do wish I had reached out for the help of others earlier. Like you, I could not depend on my family (they scolded me for eating too many carbs as a teenage because that obviously how I ‘caught’ celiac) or my friends (at a party one night a ‘friend’ tricked me into drinking beer – she just wanted to see what would happen). Honestly it was not until I found blogs like Gluten Dude that I felt like I had discovered my true celiac self.

    I see above that some folks posted some links to support groups. I would really consider looking into them and seeing if you can find a network for yourself. I don’t know you but I believe that you can get above this. It is absolutely a crap deal you have been handed and I wish that I could give you a hug. Hang in there….it gets easier – I promise.

    Reply
  44. 44

    Queenie

    I read all this . I live all this. I am just so sick of this..:( . I am sitting on Lunch replying ..because I am so sick of all the same things to eat around my job. I don’t even bother wasting my money to play roulette anymore … I should have packed . I know . In a perfect world that happens . So therefore I dont eat :( Celiac sucks!
    And seeing this young girl suffering through this. So many of us…. how many of us going hungry ? Our own families saying they are sick of hearing about gluten!!!!! YA ME TOOO! no choice though huh? I guess it boils down to greater awareness about the disease.
    The positive side :) . Yes I will put one to counteract all that negativity I just typed …. We have made great strides and each Step is toward greater understanding of the disease. I must say my family has gotten a 1/2 % better . But I usually try not to talk about gluten unless they do first. Sad I know. Maybe some day this young lady’s parents will say oh no let me serve “her” first so we don’t cross contaminate. !! You will remember that day . I almost passed out when my mom did. ! Lol.
    Stay strong . Pick a safety food . And keep talking to the “silly yaks” on here . They help you to realize you “ARE NOT” crazy and that is positive! :)

    Reply
  45. 45

    Amanda

    Hello hello!
    it seems we all get treated like freaks as soon as we discover that we’re Celiac, and that’s not fair. We didn’t choose this any more than we chose our eye or hair colour. I’m so sad for your suffering, and *so proud of you* for speaking up to us, and for taking care of your health, and for being your wonderful self – you volunteer, you’re in school, you’re articulate and most of all, YOU ARE BRAVE! You have 2 precious friends you can count on, and you’ve got all us fellow weirdos ;) and you’ve got you –> you are already well on your way to a wonderful, healthy life.
    It is really wounding when your parents (who should care the most!) don’t listen and don’t care, i know that first-hand too. I guess the best advice I could offer is to keep your good friends close, and as everyone has suggested, try to find other like-minded peeps. Also, is there someone (school guidance counsellor, social worker, church/synagog/temple… person, nurse or worker where you volunteer) that could help you find some resources and support where you live? Not just for celiac-support, but also for getting meals at home and school that you can eat, people to help you manage the stress of this really big transition, and people to show you the love that you deserve my dear? I think there’s a lot of us ready to adopt you! ;)

    Please let us know how you’re doing, and know that we’re all here for you, and each other! That’s the great thing about being different, you become a more compassionate, enlightened, inventive person. You’re well on your way, take heart. XOXO ~ A

    Reply
  46. 46

    Yasmina

    Hi there,
    What you’re are going through is really tough, in fact teenagers can be really malicious for no good reason, so there is a good chance that you are going through total emotional hell right now.

    I very clearly remember some of the issues that I had to deal with in High School that surrounded my health. Once after being out of school for six weeks due to illness, I returned to school like a trooper with a portable IV and it’s own little computer pack. My first day back there was a girl, a friend, who came up to me and took my IV cord in her hand, yanked it super hard and was like “why are you walking around with this thing?,” well she pulled that IV right out of my arm, and while my blood was flowing through my shirt, down my hand and onto the the floor, she was like “oh, sorry.” and walked away. I actually don’t think that she meant any ill will, but most people your age are simply not mentally equipped to deal with what is going on in your life, you happen to be, but even others with celiac disease who are your age don’t deal. You are special.

    It takes a great deal of courage, and confidence to stand up for yourself continuously, and you will be better off because of this. Life after High School is better than things are right now, but life is always tough and you are strong. Stay strong! It is not easy, and sometimes you will be sad, but it is worth it. Your life and your health are precious and you are taking responsibility for them. Congratulations. Seriously.

    Hard truth time…
    People are not friends with you because you are celiac and you ‘went crazy.’ They are not friends with you because they are selfish idiots.
    Not having as many friends as you would like is not an issue to be brushed aside. If there are not enough people worthy of your friendship at school, look for them somewhere else. Happiness comes from the inside out, but human are social beings and we feel better if we are able to socialize. Try making friends at work or at volunteering or take some recreational team sports (groups that are about having fun, more than competition). Make friends outside of celiac support groups because the world is not divided into celiac and non-ciliac. It is okay to ‘try on’ friends, hang out with new people, be open with them about being celiac when it comes up, but don’t share yourself with them completely until you are sure that they are true friends. If they aren’t supportive of you, or are not a good friend than you can move on and not take that personally.

    Also, there are different types of friends and you must have different expectations of different people. For example, a dishonest person is not going to become honest because they have an awesome friend like you. That is an unrealistic expectation.
    Conversely, if you make a friend that you like to go to the movies with, it is reasonable that you will have a good time when you go to the movies with them. Does that mean that they will be just as cool if you go out to dinner with them, maybe not. And that’s okay.
    When it comes to friendship, not all friends are created equal. And quality is more important than quantity. You have two good friends, which is wonderful.

    When it comes to family, life can be really tough. You have decided to take responsibility for your own health and that is awesome, but some people, even our families can be resistant to change, especially when this change comes from others. Having your household convert from non-celiac to celiac friendly may take a long time. Some people resent change and they may take this out on you in passive-aggresive ways, like not thinking of you at dinner time. But keep taking care of yourself and they may follow suit, once they realize that this change is here to stay.

    When i made some personal changes to make my life better, I changed the way I acted with the people that I love. I used to be an aggressive person sometimes and when I changed to only being assertive people were really thrown off! They just really didn’t understand the change, and for some time they were hostile with me, and thought that I was being condescending. But in time they came to see that the change was permanent and they adjusted. It was a difficult period, but the adjustment did happen.

    In my life now I have a lot of wonderful and supportive people. It has taken many years and trials to get to this point. In a way, you have a head start. You already know that you need supportive people in your life, so you can keep an eye out for that.

    The most important support I can give you is to tell you that you are worth the trouble taking caring of yourself causes. Being celiac sucks, being sick because you don’t take care of yourself is so much worse.

    You are on a difficult path, but that path will bring good things. (I met the love of my life when I was in high school. He has made hundreds, maybe even thousands of bathroom stops for me without complaint. All over the world, in the best and worst of circumstances. I can go on road trips and have fun now because I never even have to ask him to stop, he just asks me before every rest stop, and sometimes even when there aren’t any, ‘bathroom?’ When I went ‘crazy’ coming off gluten, he was by my side every step of the way, with lots of kleenex because I wouldn’t stop crying, and or cry-yelling :) , but we have been through hell together. Over the last ten years we have both accumulated friends and family that are really there for us, and we have painfully moved on from those who aren’t)
    Your path will bring you many good things. Mostly because you have made the choice to be good to yourself. Keep going.

    Here are 4 pieces of advice to that will help you to have a better life asap.
    1. Accept that celiac is a part of you and live ONE DAY AT A TIME, live in the present moment.
    2. Find an activity that brings you PEACE and HAPPINESS that has nothing to do with celiac and do it as often as possible, like dance, or sports or art.
    3. Let go of the negativity your peers bring into your life. It is not your fault that they are jerks, it is their fault.
    4. Every day write down at least 3 things that you are grateful for. They don’t have to be big. Example: today I am grateful for 1. my cat 2. that my friend said hi to me in the halls 3. i went a whole day without a bathroom emergency ;)

    You are doing great, reaching out for support is a huge step that takes courage, keep doing good things for yourself.

    Reply
  47. 47

    AmandaonMaui

    So much great support has been written in the above comments, but I just want to add another number to the list of people backing you. Sometimes all we can do is tough it out until we can get out. That may be what you have to do. If it is, then we’re here when you need to rant, cry, and let it all out. You are not alone. YANA

    If you do fear for the safety of your food, buy a lock box and wear the key on you.

    I also suggest making your doctor express the seriousness to your family.

    Reply
  48. 48

    Kelly Baker

    To the teenager who wrote the story – as you can see, you are not alone and you have A LOT of support. There are so many people you can talk to. There are so many people who understand you and how serious this is. You are far from alone. Everyone with celiac disease has been through some of this to some level, so we all feel your pain and would do anything to help ease it for you. No one should be mistreated like the way you are describing and you deserve SO MUCH better. Be really active in the gluten free community, it’s a strong community and we all have your back.

    Reply
  49. 49

    Young Celiac

    Hi this is the girl behind the email. :) thank you all for all of your encouragement, advice and understanding! It’s so great to know there are people behind me and who are going through tough situations too! I would like to make it clear that there is no need for child protective services, adoption, or calling a hotline, though I greatly appreciate the concern! Lol :) My parents love me, they do buy me gluten free food and take care of my needs:) I am definitely not “abused” in any way and wanted to make sure that was known:) just certain situations here and there add up when I’m already stressed out by my hectic and crazy life and my peers who annoy me constantly. I have graduated so am not in school but I am around a lot of teens/young people through church. Anyways, thank you ALL again! I’ve been having a rough time but I feel like things are getting a little better and I owe you all for your help! Thanks:)

    Reply
    1. 49.1

      Kim Jorgensen Gane

      I’ve been doing this for ten years, and there are still moments when I wonder, why me? So glad to know that you are OK, and that you know you will be.

      Reply
  50. 50

    Donna D

    I am so very sorry that you were not given the support you should have been able to expect from your parents, at the very least. I am grateful to be diagnosed, after 34 years of fairly severe symptoms, with Celiac Disease. We know what will help prevent these symptoms: a “simple” change of diet that excludes all gluten! But I know that I am in a far better place than you, and I can remember being 19 and having to use the washroom so frequently that I am amazed I ever completed my nursing education then.

    At 19 I was distraught and unable to advocate for myself, I was not a strong person who was able to speak up for myself, though you should see me now!

    I know that I am much older than you are, and that I can buy my own groceries, but you should consider the advice offered to connect with others with Celiac or gluten sensitivity. The fact that you have 2 good friends is an advantage…you can help them understand your requirements, intimately, and then feel safe with them. I do not have a gluten free kitchen but I make my food, typically, first, then the gluten-containing food for my spouse afterward. (As a nurse I am achingly familiar with cross-contamination and hand hygiene so I wash everything, all the time, and my hands even more now than ever before.)

    As you follow the path your life journey is travelling you will find others you can relate to, you can find support in blogs (celiacdiva.com, glutenfreegirl.com, to name a couple I find inspiration in), on Pinterest (type “gluten free” or “celiac” and you can find many recipes you can try), and people in your community. I am blessed to have a step-mom who was diagnosed 12 years ago with CD, and her daughter and granddaughter, and at work a desk-mate was diagnosed about 1 1/2 years before I was, so I had a built-in support network. My colleagues are very supportive, generally, and I have found others at work by just stating that things like pot-lucks I identify that I will bring a gluten free dish and ask others if they mind providing ingredient lists (including brands) so I can try to judge for myself if it is safe. If not? Bring my own food.

    Should you like to connect with me, you can certainly e-mail me (I believe if you as GlutenDude he could connect us with e-mail), as I know that teens can feel very isolated when they have anything that labels them “different” (Type 1 Diabetes, Juvenile Arthritis) and can have a hard time relating to others, fearing the inevitable harassment teens are so very good at dishing out!

    Please let us know how you are doing, some days are worse than others, but I can let you know that I have suffered many years of severe clinical depression that, even on meds, was manageable, but since being gluten free for the past year (and casein free) I find that my mood and outlook have brightened, my balance is improved, and I find pleasure in the little things like my cats, the sun, a flower growing in the crack of a sidewalk. The world now has bright colours…a great thing to see.

    Take care of yourself,
    Donna D

    Reply
  51. 51

    Keratee

    Life can be really difficult at times. As if being young isn’t hard enough!! The thing is though, you the one that’s responsible for trying to make some good out of a bad situation. People are mean and ignorant when they don’t know much about something and I guess they think they can just blurt out whatever pops into their head :(. Only you know what you going through and some how you going to have to find in you to not let this get to you. You young and have an amazing future ahead of you, don’t let this get you down. Try and avoid negative people and influences in your life and empower yourself to make each day a better day.

    Take it one day at a time and it will get better… eventually.
    Hang in there :).

    Reply
  52. 52

    M

    I’m glad Taylor was able to respond to this. I work with teens and adolescents and I just want you to know that there are other teens like you who are going through something very similar since their diagnosis. Your feelings are SO valid and the people who have treated you this way are simply uneducated. Because teens are often the only one who knows anything about celiac in their school it can be so isolating because they dont know the other teen in the school a few miles away who is also suffering. You seem to be a good writer- ever considered getting a Celiac support blog for teens started?

    Reply
    1. 52.1

      Taylor - GlutenAway

      Just checking..is this question meant for me or were you asking the girl who wrote the email? Just want to make sure!

      Reply
      1. 52.1.1

        M

        Sorry for the ambiguity! I meant the teenager. Thought maybe these teens could use a supportive community of peers online.

        Reply
  53. 53

    Sara

    Oh my gosh, I read this email and I want to take you home and help you myself. Shame on your family. This world is a cruel enough place and the fact that you have ignorant “friends” with cruel intentions with a complete inability to relate to you is one thing, but your family should be supportive, sympathetic, and encouraging you. Shame on the adults in your life who draw attention to an already embarrasing situation and tell you pipe down while you pray you don’t $hit your pants. I too hate the cliche bull and I am not sure how old you are, but you HAVE TO BE YOUR OWN ADVOCATE! Despite the fact that you my dear are surrounded by idiots is more of a reason to puff your chest out and take care of yourself. Find a Gluten Free support group, start getting separate cooking utensils (I recommend red) and start flexing your GF culinary skills and to heck with your family not accomodating you. Start gaining confidence in the kitchen and make something for yourself and get a dorm fridge in your bedroom if you have to to keep things safe. I am not sure how long you have been GF, but I am happy to help you in any way I can, mentor you, give you a GF boost. I call myself the Delicate Flower when I speak and I wish you weren’t feeling alone. I think the support you are getting from Gluten Dude (who is awesome) and the rest of us Delicate Flowers can give you the ability to secretly give these fools the finger.

    Reply
  54. 54

    Lee Bernstein

    Sending love. You are not alone. On the Ravelry.com Knitting is Gluten Free Group, there is a group of people with celiac or non-celiac gluten intolerance — or other food issues — who completely support you and care for what you are going through. Even if you don’t knit (perhaps you should), you are welcome to join us. You will find people there who support you and understand. PS: There is a post about you here: http://www.ravelry.com/discuss/knitting-is-gluten-free—fiber-is-gluten-free/1922516/1-25, under post #382.

    This type of bullying must be stopped.

    Reply
  55. 55

    Cat

    All the comments are so useful to one who has to deal with Celiac Disease. What everyone here is saying – you’re not alone.

    But, I know – it feels like it. When you become overwhelmed, make a nice hot cup of tea, have a great GF cookie and think about how YOU can make YOURSELF feel good.

    Often it’s about taking control. It’s a tough place to be for sure. But as you move forward, which you will, you’ll be able to tackle the harsh words and the ignorance of others.

    Both my daughter and myself have Celiac Disease. We’re basically ostracized from our family. Friends disappeared and slowly we found ourselves very alone. My daughter is in University and is struggling to be well enough to get her degree, but she’s doing it. On HER terms.

    While having Celiac Disease makes us angry – the hurt comes from the general population who refuse to learn, support and embrace us.

    Do what’s right by you little one. We can’t change people, but we can work towards coping with the them. There’s many Celiac groups in just about every city. Check Meetups and FaceBook…I’m sure there’s some you can get involved with. They’ll soon find out that they’re not as important as they think they are when you’re off and running with others inflicted.

    Cheers to you little one!

    Cat

    Reply
  56. 56

    Bethani

    This story has seriously broken my heart. The only thing I can really say is hang in there and don’t give up. Don’t give in to eating food with gluten because you’re frustrated. Find comfort foods that are gluten free and that you really like.

    Family and friends can be harsh but there are a lot of people out there as well who are willing to help you and get you through it. We are here to support you. We all understand what you’re going through. You are not alone.

    I went through college going into Pastry Arts and now going into Hospitality Management. So if you need any help with food I would be glad to help you in any way that I can. I’m even here if you want to vent!
    Just remember that you aren’t alone and you never will be! :]

    Bethani

    Reply
  57. 57

    Gluless

    This is horrible. Is there a support group she can contact? They might be able to get someone in a position of authority to talk to her family about the disease and the seriousness of it… They have to do that sort of thing sometimes. It is disgusting to be treated like that by one’s own family. It’s actually abuse to fail to provide food for her. One thing I really hate about this is that it’s invisible and the symptoms of a gluten reaction are invisible. Still, it shouldn’t take something like that to have to convince one’s own family to take it seriously. What horrific behaviour to read about, I hope this girl gets some help and some real support soon!!

    Reply
  58. 58

    Brent Alan Dedick BAD

    To my Young Celiac. Anytime this happens to you, you think about what Brent would do. Maybe you will get up in the middle of the night and fire ALL their food outside on to the driveway. Neighborhood birds and the stray cats will love you. SMILE Maybe they’ll get the message. If they still don’t, maybe one day soon the doorbell will ring. Its not going to be UPS. Cry, get it out and then the spirit and fire of Brent will come thru. Do you have any dogs? lol.. Happy Saint Patrick’s Day Love Brent P.S. All I need is a tent, small radio, sleeping bag and some gf food. I’ll text you at 3:13am. If you have a Twitter account, YAHOO here will be on board. Need to add some more to my gang. Time for bed. “I’ll be back”

    Reply
  59. 59

    Veronica

    I don’t personally have any known gluten issues. I have several friends that do.My friends have done more for educating me. They have done it by making me aware. Be your own advocate. Make it your mission to educate people about this because I truly did not know a whole lot about it and gluten is everywhere! I had no idea because I didn’t need to be aware of it. Now I find myself looking to see what has gluten so that I can make my friends comfortable around me. I think it has made me more aware of what kinds of things are going into our foods in general. You can do this. You do need to have a serious chat with your parents so that they understand that this is real and not a ‘thing’ that you are into momentarily. Have you had an actual diagnosis? Sometimes documentation from the DR. can be one of your best tools and helpful for school.

    Reply
  60. 60

    wnr

    I would like to have a girl as you – I cannot eat gluten and milk products – for men is it more harder than for girl.

    Girl will always find a mate for relationship but boy with GT intolerance? I just must be really rich to beat this disadvantage in relationship..

    life is not fair.. I am thinking to act no fair too..

    but I know that thinks will be better for you .)

    Reply
  61. 61

    Joz

    My dear girl, it does get easier.

    I had to learn to cook…. as a vegetarian, it was even harder. I embraced our local Indian community and found some amazing people who are helping me in my life. Anything that is either thrust upon you or embraced as a life choice takes savvy and intelligence to overcome. Take it on, you will be stronger for it.

    Take this one item: enriched rice. Learn to make it, eat it, love it. Build from there. Your favorite food? Build on it. Mine was peanut butter… now I can make curries, brownies, anything, because I went with it. It takes a lot of effort to keep going, but having the physical capability to play around outweighs the illness, outweighs the dying from the inside out.

    My gf brownies kill every time. Let me know if you ever need a recipe.

    Reply

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