I am 12 and I Feel So Alone in This Celiac Battle

young girl with celiac feels left out
is there a test for gluten sensitivityDude note: The holidays are all about giving. So I thought I’d take the 14 days after Thanksgiving and answer 14 emails I’ve received from my fellow celiacs asking for guidance. And I’d like this to be a communal effort. My advice, shocking as this may be to hear (sarcasm), may not always be the best advice. So please chime in and lend your voice. Maybe I can clear my inbox at some point in 2016.

Day 4 of 14

This email just came in yesterday. And while I wanted to respond to those who have been waiting the longest, this 12-year-old fellow celiac’s email just broke my heart and I didn’t want her to wait any longer than she had to for support. And you know what they say…age before beauty. If you could find it in your heart to leave her a message of support and some advice, I’ll be your best friend. Pinkie-promise.

Here’s her email:

Dear gluten dude,
my name is Leandra. I am 12 years old and have been battling Celiac Disease since the age of seven. I feel really left out at birthday parties and at social events. I recently went to a birthday party and everything was gluten-free. It was Heaven. I am also allergic to nuts, shell fish, soy, garbanzo beans, and lentils. If you could please make a post about a Gluten-Free middle school life I would really appreciate it. Please Please Please respond. I feel so alone in this battle.

Hi Leandra. I’m so sorry that you are struggling. No one, especially someone your age, should feel left out all because of food. It’s not fair. So let’s see how we can help. I’ll give it my best and be sure to keep checking back to this page and my Facebook page. This community is pretty awesome and I’m sure they’ll have some great advice for you too.

Do your parents know how you are feeling? Do you have an older sibling you can talk to? Getting these feelings out to the people who love you most is the best way to begin to feel better. Having someone you can talk to about these things will make you feel less alone. Heck…I’ll even be your pen-pal…honestly!

Between you and I, I had a real hard time at your age too. Not because of celiac disease. Just because of my life at the time. Please know that what you are feeling now won’t last forever, even though I’m sure it feels like it will.

Leandra…please take a minute and read this awesome email that I received from another 12-year-old girl with celiac, just like you. She may be able to lift your spirits, and she gives this wonderful advice: “For parties, I bring my own stuff and I’m always different. It gets easier not to be sad when I’m offered food that I can’t have. I get angry when people don’t understand I can’t have it. No one is perfect. I just remember that.

You won’t be able to control how other people act around you. All you can control is how you react to it. People your age can be mean. Heck, people my age can be mean. As you get older, you begin to realize that mean people are mostly just unhappy people and it is no reflection of you. Whatever they say, don’t let them get to you.

Lastly, I have a forum on my website where you can connect with other people with celiac disease your age. Maybe you can find someone who is about your age and understands what you are going through. It always helps when you know people who are going through what you do. Here is the forum.

Hang tough my fellow celiac. You got this.

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23 thoughts on “I am 12 and I Feel So Alone in This Celiac Battle”

  1. Leandra, how tough this must be! I got diagnosed at age 24 and it STILL wasn’t easy. There are going to be some days when you just can’t eat anything, and you’re going to feel left out – I’m sorry about. Try to remember that the good days balance out the bad days. You clearly take your allergies seriously, and that’s great – it’s a lot of responsibility with everything else in your life at age 12, so keep up the good work!

    I bake a LOT now. Growing up, my mom always taught let me bake with her, and now we’ve worked to adapt some of her favorite recipes. I make the birthday cakes for my family members, and I make cookies to bring to parties and give as holiday gifts – it feels wonderful to GIVE, I love getting to MAKE something, but the best part is I GUARANTEE that I get to eat something delicious! A lot of gluten free baking can be complicated with the flour types (I just like to buy a GF “all purpose” flour) but there’s great recipes and books out there if you wanted to get started with this. This could be a really fun hobby for you to get into.

    Gluten Dude is right that it would be great for you to have someone who understands to talk to about this. You should absolutely talk to your family so they understand how stuff it is (I broke down crying to my husband on vacation one day because it had been a HARD day to find food. Bad days happen! But having someone to tell about it helps). There’s also some great places online – if you haven’t already seen it, check out the National Foundation for Celiac Awareness’s Kids Central (http://www.celiaccentral.org/kids/). You should definitely talk to your parents before joining any public chat communities on celiac, but maybe they can help you find some others – or talk to your doctor about any local resources they would recommend.

    Hang in there, and keep taking care of yourself!

  2. Hi, Leandra! Celiac is a difficult diagnosis, isn’t it? I was diagnosed last year, and I’m 44. My doctor and I think I’ve had this since I was very young, but I didn’t know what was going on. The good thing is, we know what’s going on, and can work to deal with it.

    Interestingly, my daughter was diagnosed just a few months before me last year. She’s 16 now. It’s been difficult for her, especially at school. Her birthday last year was on the first day of school, and one of her teachers brought in cookies for the whole class! My daughter couldn’t enjoy one. She recognized the teacher was being kind, and didn’t know about her Celiac at the time. It was hard for her to not have a cookie, but she knows how much better she feels when she stays away from gluten. She goes to a large school and she knows a few other kids with the same issue, so that helps.

    Don’t be afraid to share your feelings. Talking to others helps so much. And don’t be afraid to stand up for what is best for you. My daughter and I work together on kindly letting people know why we can’t have something that’s offered, when we need to inform them. It can be really difficult to deal with feeling left out. Think of what you CAN have. Don’t be afraid to try new recipes to find great alternatives to what you miss out on. I see this diagnosis as an opportunity for a culinary adventure! I hope you’ll remember that even when we feel left out, we are a healthier version of ourself in the end.

    Good luck, sweetie!

  3. I make my daughter the same foods as everyone else and bring to parties….also we make her birthday food all gf and everyone loves it..no one even knows the difference including the parents…

    1. Debra, this reminded me that my bridal shower was hosted at my also-GF aunts house, and it was a tea party complete with little sandwiches and everything was available both GF and not (with so many guests, I understand GF for all gets pricey!). It was INCREDIBLE to be in a place where I knew it was safe, delicious, and for me! Great job making sure your daughter can just be herself on her birthday and not have to worry!

  4. Hi Leandra,

    I hope that knowing so many people understand how you are feeling is making you feel a little less alone in your battle. My daughter is 11, and was diagnosed at 7 years old, too – and she has a number of food allergies as well (Celiac and allergy twins! 🙂 ). She always takes her own food to parties or events with food (there are SO many). But sometimes there are surprises (someone brings cupcakes to school) and I know how hard that is. Other kids sharing (yummy unsafe) desserts at lunch is tough, too. Family and friends try to get it, but sometimes miss pretty big time. We do try a lot of recipes at home — and once in a while, we find a really good one. My daughter and her classmates LOVE her safe fudge, so she takes that a lot.

    If you are looking for a penpal, perhaps Gluten Dude could connect us. I know my daughter would welcome someone her age to talk to who understands.

    Hugs to you.

  5. Leandra, I have an 8 year old with celiac and an 11 year old. I know Middle School years are tough especially when you have something that makes you different from others. It will get better. Meanwhile please try to find a support system. I will forward Gluten Dude’s forum info to a friend who has two middle schoolers with celiac.

  6. Hi Leandra

    First of all thank you so much for sharing. You are so brave in so many ways. The biggest step you have taken is to reach out to others and to talk about how you are feeling. This is amazing for someone your age. There are so many of us who understand (part of) what you are going through. It will always be tough to have celiacs and food allergies. I am 42 and I am just recently diagnosed. Looking back on my childhood and my teen years I do believe I had this my whole life. I am glad you know now so you can take proper care of your health. When I reflect on my past health and compare it to how I am feeling now – I wish I had known earlier. My 30’s were especially tough. Now that I feel better I am happier! Sure I have tough days but when I think back to all the pain and upset tummies and how many events I missed because of gluten illness -well – I live gluten free more positively now. Hugs to you sweetie. Keep sharing and talking. You are an amazing strong girl!
    Cheryl

  7. I have spent a large portion of my life trying to figure out all my food intolerances. I have been able to narrow it down to those oh so lovely high FODMAP foods. Even though all this self-discovery has been a long, and sometimes painful and sometimes gassy (!) journey, I know sooo much more about how food affects my body, way more than anyone who hasn’t had to go through such an ordeal. I guess what I’m trying to say, Leandra, is that you are making yourself this well-rounded, knowledgeable person even without realizing it. It’s obvious you’re mature beyond your years. Hang in there and keep (as nicely as you can, of course, huh hum) educating those around you. You’re awesome! 🙂

  8. Leandra

    My son is 14 now diagnosed at 10 the school nurse let him keep cookies in the office freezer so he could have a treat when the other kids were having a party. It gets easier as the years go by. I also make his lunch every day he is ok with that.

  9. Hi Leandra! I was diagnosed as a diabetic at age 10, so I know a little of what you’re feeling. It’s really strange to be something different from everyone else, and the other kids won’t know why or how.

    One of the things my mum did was give me a little school box with fun stuff just for me for my backpack each day. It had some candy, stickers, little juice boxes, and sometimes little cookies or cake in it. Whenever there was an emergency (my blood sugar was low, all the kids got something I couldn’t eat, etc.) I could open it up and it always made me smile.

    Middle school is sucky for everyone, no matter what their allergy or even no health issues at all. It gets better. High school is better, then college is better than that, then adulthood is better than that. Use your time to find a passion that makes you feel better, like baking, or knitting, or singing, etc. Join lots of clubs and have lots of fun that doesn’t revolve around food. Find other people with allergies and band together to support one another.

    I’m not going to lie and say its all amazing, but you can get through it. There will be good days and bad days, but you can do it!

  10. Dear Leandra,
    My daughter, Kaydee, is also 12 and was diagnosed with celiac two years ago. She still struggles with feeling overwhelmed and left out. She has even experienced bullying at school because of this. It’s very difficult because there isn’t much anyone can say or do to help..I think just time. I also try to remind her that her body will eventually thank her. She has been sick her whole life bc of celiac and even after two years of gf living, she still struggles. Allow yourself to feel what you are feeling. I’m sorry you are going through this. Praying for you.

  11. Hi Leandra,
    My son Diego is also 12 and he was diagnosed at 7 with celiac. He saved me because finding out he had Celiac brought me to find out that I also have it. I was diagnosed a few months after him. I understand what you are going through I see it in my sons eyes. It is so hard to feel left out, I even feel left out when people around me are eating things that I would have liked.
    I try to explain to Diego gatherings are about our friends not food. But I know it’s hard. You are not alone. I always try to bring a special treat for him when we go out places.
    I hope at this point you have been feeling physically better, and know in time you will meet many others with food allergies of all sorts and you will hopefully feel less alone. In the mean time we are all here for you.

  12. I wonder if there’s any way you can begin to change how you think about celiac from a “battle” to this is just how your body is. Battling every day is hard. Living with restrictions is hard to, but not as hard as fighting every day. A small shift in how you talk to yourself about it may change how you are feeling. Hang in there. Middle school is temporary, even though it doesn’t seem like it right now.

  13. Hi Leandra,
    You are not alone sweet girl! We are a huge band of fellow Celiacs who would have your back in a seconds notice. My 14 year old and 12 year old son are both completely gluten free, they were not tested but all the signs are there and since I have it, we are certain that they do as well. Middle school and High school life is definitely challenging having celiac, however stand strong, you are much healthier than your schoolmates, you are not eating all the juink that they are. My 14 year old tells me all the time that he even eats healthier than the teachers. I try to think of myself not as different and alone but unique and special, my body works best when I eat a certain way and it is delicate, so is yours. My middle school son is also allergic to nuts, dairy, soy, wheat, eggs, and corn. So, when you are feeling alone, please think of my 12 year old in Tennessee who is going through the exact same thing. It’s been an awfully long time since I was in middle school but I do remember not wanting to be different in anyway, so I can’t even imagine how hard it is! Sending you a hug and prayers. You are stronger than you know, you are special and not alone. The celiac family is growing everyday and you are a huge part of it!

  14. Hi Leandra,
    I admire you so much for speaking out and sharing your feelings. And good sleuthing in finding The Gluten Dude. He had made a wholesome safe place for folks with Celiac to share emotions and support.

    Although I am “just” allergic to gluten, and not diagnosed as Celiac, I feel real kinship with the Celiac community because we have so much in common. Many people in my family are allergic to gluten, and my granddaughter is Celiac. She is in her first year in college, and when she was searching out a school, one of her primary requirements was a university that respected her dietary requirements while she lives on campus. Gratefully, she found a great school (Georgia Tech), and is happily studying and safely eating there.

    My granddaughter has also “invented” a chocolate chip cookie recipe that is sooooo good and undistinguishable from non-GF cookies. I’ll see if I can get that recipe and post it here (unless it contains your other allergens).

    You CAN do this. I know it is tough, (my workplace had my going away party in a pizza parlor…). People don’t always know how to be helpful, or “swear” you can eat something that wrecks you later. But there will be the wonderful people too, who learn how to cook for you EXACTLY right, and really care. I promise.

    If you haven’t found them yet, there is a company called “Enjoy Life” that has a dedicated manufactering facility that is gluten free and also dairy free, nut free, soy free, egg free, fish free, and shellfish free. Amazing. (You would still have to watch the ingredients for garbanzo beans and lentils.) Worth looking for them. The chocolate chips are deeelish.

    Hang in there, Leandra. You can be the kid who has become a stronger person, who reaches out and supports others with similar issues, and who has a great understanding of the complexities of the world. And the one who REALLY understands how important it is to take best care of yourself. I know you can.

  15. Hi Leandra..thank you for sharing your life experiences with all of us. It takes a great deal of courage to share true feelings and struggles. Trust me I know this because I am a counselor who works with individuals of all ages and I admire this awesome quality that you display..with that being said you can use your fine quality to navigate your way with living with this disease..it takes courage to say “no thanks” to friends, peers, and family.. I believe courage will open that door to many other qualities that I bet you have. Such as discipline, perseverance and being a strong voice to help educate and advocate for all of us who have Celiac. Maybe you can start a group at your school. I bet you would find that there are many others in your school who can relate with you. I have found that I can either keep my feelings all inside which adds to me feeling ” different” or I can be open and honest about some of the obstacles I face which I have learned helps me stay connected with others.. I have also learned that by bringing my own food or treats sparks conversation and I have met new friends because it. So my hope for you is thatcan experience this as well. bring your treats to the party and be prepared to make extras lol people are curious by nature and it could open up a new friendship, education for people who have never heard of celiac disease and it will make you feel a part of something very special.thank you for sharing I hope you have a wonderful holiday. Carla

  16. Hi Leandra,
    I am a school librarian who has celiac and diabetes. My mom also had diabetes and she said to me just pretend the tempting foods have bugs in them! I allow students who are not comfortable in the cafeteria to hang out in the library at lunch time. Maybe you can talk to your media specialist about bringing a friend with you. I find it hard to be at the table when others are eating desserts so I leave the table and use the restroom or find a place where I can read till they finish. Having a plan helps. Maybe bring some games to parties and start some fun in a food free area. Hope these ideas help. Writing in a journal you carry with you, drawing and coloring in a sketch pad, and listening to music can also can give you a break from stressful situations. Remember you are not alone because we are all your new friends!

  17. Hi Leandra,

    It’s heartbreaking to hear how bad you are struggling, and how young you are at that. I’ve been celiac for three years. I was diagnosed at 32, after a year and a half of vomiting, fatigue, constant nausea, joint pain, hair loss…the list goes on. On top of that, I was working for a woman who didn’t care. She made me feel guilty for taking off work to go to the doctor’s office, hospital for tests, and the life lab for more tests. However, I never called in sick when I violently vomited with diarrhea the night before. And, it also didn’t matter that I always made up the time that I did miss. Please know that there are always going to be people out there exactly like her that couldn’t care less about what you have and what you go through.

    You may not know it now, but things will get better. It certainly wasn’t instant recovery for me. It took me another year and a half after going gluten free to begin to start feeling better. For three years of my life, I felt crappy every day, and it took every ounce of strength I had left to get out of bed. Because of all this, I’ve evolved into a stronger person. I think that having a positive attitude about this disease can help. Try to think of it more as a burden than as a battle.

    Please know that you are not alone, and that there are many people out there who care a lot about what you’re going through. We will always be there for your support.

    Good luck and all the best to you 🙂

  18. Hi, Leandra, It is hard enough to be 12 years old and trying to figure out how to transition from childhood to adulthood without also having to deal with a condition that affects your social life as well as your health. I was diagnosed with celiac 3 1/2 years ago when I was 65! My 32 yr old daughter also is gluten intolerant. We have learned together how to deal with this. A couple great things are that we can still eat out together: PF Chang’s has never been a problem for us. They do charge more for GF, but it is delicious. Also Denny’s now has Glutino’s English muffins and you can have them make a hamburger using them. They are really good! Idon’t know if those english muffins have your other allergens…they might.
    The first time I made regular pancakes for my husband after my diagnosis, I cried, but now I have great recipes for pancakes. My daughter cried when I made some biscuits that were like hockey pucks. She always comes to our house on Christmas morning for biscuits and redeye gravy. (It is a tradition for her and her dad.) Now that I can actually make decent biscuits, she and her dad can continue their tradition this year.
    You, also, will continue to find ways to get around this mess. Keeping stable snacks in your purse or backpack can be helpful. My attitude is that I do not expect anyone else to feed me. I am thrilled when my friends and family make the effort to provide something I can eat.
    The best to you, darlin’. Remember we are here for you.

  19. Hi Leandra,
    It’s been a few years since your post. I’m curious how you’re doing. My kids have Celiac disease and
    multiple anaphylactic food allergies. All I can say is middle school was the hardest merging all the kids plus the teachers were really difficult. High school has gone much better with kids, teachers, and administration. If you’re still struggling, please see a therapist. The school can help set up an affordable therapist if needed.

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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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