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33 Comments

  1. 1

    Mary

    I understand where these kids are coming from. My son was diagnosed freshman year of high school and felt like such an outsider. He has finally found a group of friends that understand and get it. They are very accomadating when it comes to him eating. They know that the safest place for him to eat is at home. His friends do go out to eat and he cannot eat with them but he still goes with them and has a soda. He has said it is frustrating not being able to eat with them but is glad he can still spend the time with them. He has graduated from high school and says it is getting easier. He would rather feel better than to cheat and feel like crap. Hang in there, it will get better!

    Reply
  2. 2

    Emily

    I’m a college student in Tucson, AZ and currently the president of the Gluten Free Club at the University of Arizona. We started the club about a year ago and it’s been a slow process getting new members but we’re doing great things for the U. It’s been wonderful getting to know other people my age who are gluten free and serve as a support for each other as well as work with dining services to get new gluten free options on campus.

    We also have a local Celiac Support Group which has over 200 members. I would suggest that you start there. Try getting in touch with these people somewhere nearby you, and it is likely that those adults have kids with celiac or know other kids with celiac. You can start a group where you get together once a month and have a pizza party or go out to lunch together. This will allow you to get to know each other and share your struggles. You may also be able to write to your local paper about your plans to do this and since GF is such a hot topic right now they might do a feature on you which would allow you to reach a very large base of people.

    As far as for Allie I know it is incredibly difficult in high school and it won’t get much easier in college, especially living in the dorms, BUT you should really research colleges before you attend because there are MANY (such as the U of A) who are making big leaps in their dining services and can provide you with all kinds of gluten free food as well as resources such as our GF Club.

    Udi’s also does an ambassador/internship program which is super cool and you can find info for that here: (you could even become an ambassador, or start your own club at another college if you have the drive to do that!!)

    For more information or to apply for the Udi’s Gluten Free Internship program, please email a resume to collegeambassadors@udisglutenfree.com.”

    I know this is still down the road a ways for you, but I hope it may be helpful. I also figured anyone else reading this post may be close to entering college. Good Luck Girls! Stay Strong and find other girls your age who are going through the same thing- it will help BOTH of you in HUGE ways!

    Reply
  3. 3

    Krisandt

    Hi!
    Kris and I were both in our late teens when we were diagnosed with Celiac’s Disease.
    We create our blog because when we started college it was EXTREMELY difficult to eat healthy or even right in the university environment.
    We try our best to relate and give tips to the younger audience who are gluten free.
    We have written about our gfree story here:
    http://krisandtgogfree.blogspot.com/p/the-story-of-kris-t.html

    We totally get how teens/kids feel when it is like to feel left out because of dietary restrictions. We have an entire tab on our blog dedicated to FAQ, tips, and advice.
    Hopefully you can find something helpful there!

    Reply
  4. 4

    Amanda

    Hey, girl from article #1 here! If anyone knows anyone that is younger with celiac disease, and you think they may need someone to relate to, I’d be happy to talk with them. :) With a diagnosis at 7, I haven’t been able to connect with many celiacs, and would be MORE than happy to. So basically what I am saying is in 3 short points:
    1: younger celiacs who need someone to relate to
    2: send them to the email in the article
    3: Talk, relate, feel better. :)

    Reply
    1. 4.1

      The Gluten Dude

      Thanks Amanda. By offering to reach out, you’ll be helping others and yourself. Good call!

      Reply
    2. 4.2

      Emily

      Amanda and Allie,

      I feel your pain. I just turned 16 and have been living with Celiac for 3 years. It sucks. The kids at my school think its a huge joke and enjoy throwing bread at me and offering me foods they know that I cannot eat. One of you mentioned summer camp. I thought my fun trips to camp were over when I was diagonosed but my family and I found a loop hole. Bring your own food. Face it, are you really gonna let your diet ruin your summer? Sure, the other girls think its strange, weird, and odd, but who cares? I would love to see some of the daily jerks try to go a month in the living hell of being gluten-free. Im in desperate need of help. I am becoming so sick of eating the same few foods day after day. I cant keep avoiding eating breakfast, lunch, and dinner by snacking on chips. I need some (non-salad) ideas. I eat cinnamon chex (which is OUT OF THIS WORLD) pizza, chili, PB&J, and burritos (all of which is gluten-free). I just need more ideas! I am going crazy.

      With great understanding and sorrow,
      Emily

      Reply
  5. 5

    The Gluten Dude

    Somebody just posted this on my Facebook page:

    We found a website/Facebook page called g-free kid that has pictures and bios of kids of all ages with celiac and it made her feel like she’s not the only one. I realize these kids are older, but they may be able to connect with kids their ages in similar situations. I know that connecting with the gluten free community has helped me feel a lot better about navigating this new life.

    Reply
  6. 6

    MathewS.

    Honestly ladies, I envy your situations. Bare with me while I explain.

    Growing up I was always obscenely skinny. The only way for me to gain any weight was by putting on muscle mass via hard labor such as roofing a house for multiple days on end. When I graduated high school in 1999, I weighed around 125 pounds while standing an even six feet tall. I also might add that I worked the last ten years in the telecommunications industry sitting behind a computer screen and/or on a telephone – so it’s not like I’m constantly burning calories. Fast forward to late 2011, the malnutrition had slowly and painfully knocked me down to 116 pounds and now standing five foot ten inches and I had felt as though I was having a heart attack for two weeks straight on top of my normal pains. Growing up as somewhat of a jock, playing baseball basketball & football, I can only wonder what could have been with a more healthy diet and some more weight/muscle.

    Another common teenage/early 20s activity, DRINKING ALCOHOL. Luckily, when I started drinking, I quickly figured out that I preferred hard alcohol over beer since both were available. I could only drink one to two beers before feeling bloated and full. As I became legal and the drinking parties started to mature, beer became the primary beverage. After taking enough shit for drinking the girls’ alcohol and seeing the prices of mixed drinks at the bars and such, I began drinking beer to get drunk. Everyone complains of hangovers, thus I thought my issues were just a hangover when in reality it was my body purging or beginning to recover from yet another exposure to gluten.

    Another aspect of those teenage years, to put it simply, is to look your best. Despite doing it anyways, nearly every common hygiene practice brought about a ‘Gotcha’ for me. I would brush my teeth twice a day, but feel sick for hours afterwards although I did figure out it was a bit better if I kept spitting all the saliva that entered my mouth for an hour or two afterwards. In hindsight, that was nearly just as bad as not brushing because by leaving my teeth and mouth dry for that duration they were more exposed to damage. Additionally, I allowed more time for the remaining glutenized toothpaste residue to attack the inside of my mouth. Regardless of the shampoo I used, I would constantly be fighting dandruff. The dandruff control shampoos would only make it worse. I had the normal teenage acne. I also would get what I joke look like herpes soars anytime I shaved. Having itchy arms or legs were the norm. Wearing deodorant and/or aftershave would commonly make the location sensitive or the glands swell. I can often remember times where I would hold my arms straight out to my side or above my head because the glands in my armpits were so swollen and painful. I had even broke out in hives once after pulling a pair of jeans straight from the dryer, come to find out my mother had switched laundry detergents. Whether that’s related or not, I have not yet began to address; luckily, the laundry detergent I get along with is still in production to this day.

    Amanda:
    Although I am 30 years old until tomorrow, I would be happy to speak with a fellow sufferer should you desire at any point. I do not have children, so I won’t get preachy with you or anything along those lines. I’m also young enough to still remember some of the BS we all have to deal with at your age. Contact info at the bottom of this comment if interested.

    Allie:
    I believe at your age you have likely heard of Einstein’s theory of relativity before. For any that have not, there are plenty of websites available with quite in depth explanations. My point being, in relation to everyone reading/commenting on this blog, YOU ARE ALREADY NORMAL. Sure, if you consider in relation to the rest of your school, having CD would not be normal. However, in relation to the real world where 1 out of 113 people have it, I would consider you quite normal. By the way, you mentioned your local supermarket not having many gluten free offerings and you also mention being 17 years old?! You not only have an excuse to drive, but a valid reason to hit up that next city over or similar location! Hell, I would’ve made the ‘rents give me some cash for the food and some gas money too! Health food places normally have an aisle dedicated to gluten free and Meijer/Wal-Mart are beginning to stock quite a few things as well. I shop regularly at each of these, in addition to my local supermarket. Also, if you have a smartphone, there are plenty of gluten-free apps on the android market to help you locate gluten free restaurants, health food stores, etc.

    Everybody:
    So to sum all this up, in my opinion you girls are in a uniquely normal situation :) Your age is one of opportunities (normal), and knowing you have CD (unique) at your age gives back many of those opportunities that might have been lost otherwise. Is it more difficult than without CD? Yes, of course. But don’t forget, what doesn’t kill us only makes us stronger.
    Should either of you, or anyone for that matter, want to get in touch with me – just hit me up on Facebook via Mathew ‘Shaggy’ Stroup. My email is available from there and feel free to email me if you wish, I’m just trying to limit my potential spam exposure since the account is linked to my smartphone.

    Reply
    1. 6.1

      Dani

      Matthew.. Just read your post and it struck a chord! My 12 yr old daughter has been having a difficult time the last 4 months. It started out one day brushing her teeth. The taste in her mouth wouldn’t go away so she kept spitting out saliva to the point some days she carries a cup around. At about the same time she started obsessing about what she ate. This has led to a 15 lb weight loss. After having blood tests, it came back positive for celiac. We are going to s specialist next week. Hope fully they will give us some answers. She just isn’t her normal self and I’m so worried! Thx for any input you may have :)

      Reply
  7. 7

    Sara

    I am nineteen years old and I am in the same situation as Allie. For years, I had stomach pains, abdominal pains, and could never put on weight. Because my family can’t afford health insurance, we could never go in for a conclusive diagnosis for celiac disease. I too went on a gluten free diet on my own, and all of my symptoms have vanished. Luckily, since I will be attending university in the fall, my student health insurance will cover celiac tests so that I can get conclusive results, hopefully from genetic testing, and make sure that no one in my family has to go through the pain that I did.
    It is daunting. In college it is even more daunting, because you can’t do the whole “midnight pizza and beer” thing that is so common on college campuses these days. May I suggest in your college search that you look at the gluten free options availiable on campus? Emory University, where I will be attending in the fall, has recently put in a place a gluten free program that is strict enough so anyone who is not gluten free cannot get anywhere near the “celiac only” area to avoid contamination.

    The first thing I can tell you is that don’t go around thinking that you aren’t normal. Yes, you have a disease. But is a manageable one. As a celiac, we’re all going to be paranoid about what we eat and be scared of doing social activities because of the fear of contamination. But you have to get passed that. The first few months are always hard, because everyone including yourself, is not sure how to react to your intolerance. I remember telling my Italian father that I couldn’t eat wheat anymore, and he nearly wept because he didn’t know how he was going to make vegetarian gluten free Italian meals. It is going to take awhile, but soon gluten free will be normal for you too.

    I would suggest that you cook more. Going about with the mentality that you can’t eat anything is only going to make that wish come true. Learn to make all of the tasty snacks, like cookies and pizza, at home in your own kitchen using gluten free items. Start trying other cuisines and dishes that don’t have a lot of gluten in them–try making a dish using only vegetables for example. Look at cuisines around the world that don’t rely on the grains that we do. I have tried a lot more Indian and Mexican type dishes (using corn instead of flour) than I ever would have if I hadn’t gone gluten free.

    When going out, may I recommend coffee shops? Also, a lot of the independent chains are starting to offer gluten free items. This is the time to do some exploring.

    Please remember that there are millions, literally millions, of people going through this just like you are. Is it a diet restriction? Yes. Is it going to be easy? No. Are you going to have to go through your “I am gluten free” story a bazillion times to explain it to everyone? Yes. But that doesn’t mean you have to go around eating rice and produce all of the time. You have options. Thinking that you don’t will only make it worse.

    Hope this helps!

    Reply
    1. 7.1

      michael

      great post Sara, I’m a year out of college so a lot of the GF fad wasn’t in full swing when I was a freshman, a few more tips about college. Become friends with everyone in the dining hall, know their names, learn how to say gluten in spanish if necessary, firgure out who the boss is and talk to them with your parents when you get to school. Their job is to take care of students, they’ll do right by you if you give them the info. As good as those people are get out of the dorms ASAP, get your own kitchen and take control of your own diet, it’s extremly liberating and learning how to cook gluten free will is a lifetime challenge for all of us, you might as well start training now. If your not cooking start finding your go-to resturaunts and stores, avoid any diet anxiety by finding your safe places early.

      Reply
    2. 7.2

      Bob Smith

      I’m sure that the student above believed that Emory would be a good choice for dining GF. I’m fairly certain that Sara was in the end disappointed. Many sites state the salad bar at Emory is GlutenFree, it is NOT. There are in fact no GF cross contamination free fresh/uncooked fruit or vegetable options available for Celiacs. For breakfast a student can choose from an unappealing high calorie muffin or a waffle that falls apart in the toaster. There is no protein (yogurt, eggs, etc.) or fruit available that is free of cross-contamination. For lunch and dinner students are offered a piece of meat or fish, dried out crusty rice or potatoes, and a vegetable (most frequently slimy squash) . Some meals seem to be recycled from previous menus, but I don’t know this for certain. While the menu will call this meal something new and different, it is similarly plain and unappealing meal over and over. While the rest of the students are eating a wide variety of different vegetables, entrees and ethnic foods these students are paying a premium to have little to no good options. As Michael stated, “firgure out who the boss is and talk to them with your parents when you get to school. Their job is to take care of students, they’ll do right by you if you give them the info.” We have done that, but nothing has changed. The croutons have stayed in the salad bar, and there is no GF yogurt, fresh fruit, etc…

      Reply
  8. 8

    Chris

    Hi Amanda and Allie,
    I have a teenage daughter who is severely gluten intolerant. I had been working on making decent GF bread before we understood her situation. Now I have developed recipes for some of those foods that we miss when we have to cut gluten from our diet. How about croissants that are gluten free, or flaky pastry that is light and delicious, and gluten free. I work on the basis of developing gluten free food that anyone would enjoy. So, no my daughter can take out home made food that she is comfortable to share. She can have friends around and be confident that she can share her food with them.
    My breads and pastries are tasty, nutritious and varied in both style and flavour. I sell copies of my recipes on Etsy at Recipesforliving.etsy.com
    If you contact me through Facebook.com/Recipesforliving and mention Gluten Dude’s article, I will be happy to give you one complimentary copy of the recipe of your choice.

    Reply
    1. 8.1

      Chris

      Oops,
      I should have made it clear, anyone who reads this page is welcome to take my up on my offer.
      Chris

      Reply
    2. 8.2

      Amanda

      hey chris:
      If your daughter would like anyone to relate to, you can send her to my email from the article. and btw, my mom and I found a brand of gluten free bread that you can find in stores. (we buyit at kroger) its called Udis. weird name, I know, but its QUALITY.

      Reply
      1. 8.2.1

        Chris

        Hi Amanda,

        I’ll mention it to her. She is studying for mid-year exams at present. We are in Australia, so our school year is a little different to yours.

        Thanks for recommending Udi’s. We don’t get their products here, and most of the bread available in the stores if pretty awful, that is why I have made it a hobby to develop really good gluten free baked products. Last year I even won a prize at the local Devonport Show (Fair) with o be of my breads. I was competing against regular wheat bread! This year I plan on entering some other products.
        Kind regards,
        Chris

        Reply
  9. 9

    Gluten Free

    I was diagnosed as a teen . I think having a few hobbies really helped me it took my mind of CD and gluten free . I used to skateboard a lot when I was diagnosed , I think it took my mind of things . Than I started learning magic a few months after being diagnosed and I became completely obsessed spending 12- 15 hours a day studying and practicing I didn’t have any spare time to think about CD ! I don’t think at the time I realised it but now I think taking up magic as a hobby was the best thing I could have done as it gave me something to focus on and really take my mind off the illness . So if you can find a hobby you really enjoy I would recommend that to take your mind off CD and have some fun :)

    Also I wouldn’t recommend this , but as I hated school so much that every time my stomach was bad I always thought cool a few days off school instead of getting annoyed about feeling ill , kinda stupid but I think it helped me :)

    Reply
  10. 10

    Allie

    Thank you all so much for your help! I have loved reading all of your comments with advice. Before I felt like sort of an outsider to the community and was really nervous when I sent my email to the Gluten Dude. Now, I feel like I am part of it, and the encouragement has put me in so much of a better place than I was in even yesterday. Thank you all again so much.

    Love and Best Wishes
    Allie

    Reply
  11. 11

    Lisa

    hi all,
    my daughter was diagnosed at 13. She is 15 now and I think it is a really hard time in life to be diagnosed. I am sure she would be more than happy to be in email contact with any other coeliac teens out there who need support.
    We are keen to find out about student exchange opportunities for coeliac teens, if anyone has any info. This year our daughter had to miss out on a school trip to Japan, because we felt they couldn’t look after her properly there. In the US you guys are lucky because you have coeliac summer camp. IN Australia we have nothing like that! Anyway, best of luck to all coeliac teens (and their parents). Lisa :)

    Reply
    1. 11.1

      Amanda

      I totally understand how she feels. I had a chance to go to washington D.C., but wasnt able to because of celiac disease.

      Reply
    2. 11.2

      jim

      I think it would be helpful for my 13 yr old son to connect with others with the same issue. I live in Canberra.

      Reply
  12. 12

    Miss Dee Meanor

    I saw this today on one of my Facebook feeds from Hold the Gluten and thought about our two teens. It is a YouTube video created by a UC Berkeley student explaining what it’s like to have celiac disease.

    http://www.youtube.com/watch?v=Y4G5Qw8S90M&feature=plcp

    Reply
    1. 12.1

      The Gluten Dude

      Thanks for the link Miss Dee. I actually blogged about that video back in November. I love it.

      https://glutendude.com/gluten/celiac-disease-is-hard/

      Reply
      1. 12.1.1

        Miss Dee Meanor

        I am always a day late and a dollar short.;)

        Reply
  13. 13

    Alisha

    I was never diagnosed wth gluten intolerance or CD, but I quickly learned what effect gluten had on my body. Primarily, my rosacea has all but disappeared. Now when I get glutened, my cheeks become instantly blistered, hot and painful. I’ve been blogging healthy recipes for close to three years now and when we ditched the gluten, I went through them and was happy to realise that most of what I was already cooking was either naturally gluten free or easily adjusted with a simple change in ingredients.

    The best thing you can do for yourself is learn how to cook and bake to accommodate your own body. Gluten free food can be REALLY good, simple or gourmet, If you’re young, find recipes you like the sounds of and give them to your mom. Ask her to make them for you. That’ll help make one place a safe haven for you … your own kitchen!

    Reply
  14. 14

    michael

    First off wow, I wish I had this website 10 years ago. I was diagnosed with Celiac when I was 13, the diet conflicts didn’t help but growing 6 inches and gaining some LBs did help me out socially a little bit. The everyday lunches in high school are tough, its no secret that lunches (at every age) are dominated by gluten. I would always eat a big breakfast so I would have more options at lunch, the bacon, eggs and (GF) bagel I had a breakfast made it possible to have a light lunch of a power bar and fruit, instead of needing to have a full meal. Light lunches are healthier (as opposed to light breakfast) and allow you to order the salad at the Italian restaurant and not be starving an hour later.

    Another tip would be to treat your friends to a GF meal sometime, bring GF snacks after a sports game one day, a lot of people assume GF stuff is nasty, show them you can make a great GF cookie and maybe they will be more likely to try out GF foods with you in the future.

    For the Girl in Michigan, college is a great time to see other parts of the world, and if you really want your eyes opened go to college in a city that is large and/or has a good gluten free reputation. I’m not saying you should abandon your family, but big, liberal cities are more accommodating for celiacs. I grew up in portland, GF mecca, and moved to central California for school where my options weren’t what I was used to, I have since moved to SF were GF beer is even served in random liquor stores.

    That brings me to the last piece of advice, the drinks. Start doing your research now if you intend on drinking in high school or college, not to advocate it, but I know it happens. I stick mostly to rum, wine and GF beer, I drink whiskey as well, but that is a source of controversy in the GF community, everyone if different so figure out what you feel comfortable drinking, and make sure your friends know what kind of drinks you can’t drink (people often overlook mike’s hard lemonade). Some people just avoid the entire thing, but in the real world college students get drunk, try any questionable substance in small doses so you know the source of your sickness, 10 shots can make non-celiacs throw up too. Good luck kids

    Reply
    1. 14.1

      The Gluten Dude

      Awesome advice from someone who’s been there. Thanks Michael!!

      Reply
  15. 15

    Jacqueline

    Hi Allie and Amanda,

    I’m 18, and living in Newfoundland, Canada. Like Allie, I’ve had stomach problems for years without really knowing what was the problem.

    When I was 10, my mom sent me to see a doctor because I was very short for my age. They proceeded to put me through multiple tests including blood tests, x-rays, and MRIs. They even checked to see if I had a brain tumour. Of course, testing for Celiac was not considered.

    A little over a year ago, I began experiencing severe pains and swelling in my stomach, and became unbearable. I wouldn’t eat for days because I was afraid of eating something that I was allergic to. A few weeks later, I came across the Canadian Celiac Assocation, and looked through their symptom list. I matched everything. Also, I did some research into my family’s health records, and my grandmother showed many signs of Celiac. 3 of my uncles have bowel problems as well such as Crohns. I got the blood test, and it was inconclusive. So, I decided (like Allie) to try going gluten-free. I’ve now been gluten-free for a year, and I have never felt this good.

    Anyway, I am so glad the two of you are taking the initiative to get involved with the “gluten-free community”! I am trying to reach out to other teenagers and kids with Celiac in my own province, and I would love to contact you both about your experiences, and hopefully get some tips as you have both been coping longer than I have.

    Thank you so much for this post,
    Jacqueline

    Reply
  16. 16

    Jamie

    I feel your pain Amanda and Allie. I really do. I got diagnosed when I was 2, but every time when I went out with friends and other people as a youth I cheated on myself and ate things that weren’t good for me. Actually didn’t manage to stop till I was 23-24. Just because I wanted to feel like everyone else, not having to start a ruckus every time we were to eat. Rather not speak up, and let things pass by. Take the toll later, but in the heat of the moment feel… “normal”. I feel so silly sitting here, thinking back and writing about it. Why did I do it? All those years of missary, just because other people don’t understand. Now I’ve come to realize, many people still don’t get it, and probably never will as they haven’t gone through it. As long as you stay strong then you will learn to accept it, and over time hopefully befriend people that actually do care! (Even if they don’t go through it themselves. Yes, they do exist!!)

    I think it is important to just try to accept and come to terms with it. Even though it can be really hard. Try to find joy in foods that most people don’t, just because they are too lazy to put in some effort when it comes to making food. Pre-processed tastes really bad anyway so you guys do have the advantage of becoming good chefs/cooks by natural selection! Just embrace it (when the time is right).

    The thing about celiacs if not taken seriously is it can become quite scary. I’ve suffered with a lot of neurological issues, brain fog, fatigue and chronic pain, headaches and the list goes on. I think living healthy will be the most important thing you guys can do, and don’t worry about trying to feel normal. Being normal isn’t all what it is made up to be. It certainly doesn’t make them happy by default ;) it is what you decide to do for yourself and the other people around you. Find what really makes you happy and other people will be attracted to your personal success and glow.

    A mix match of my thoughts and previous experiences… I really hope you guys find a positive outlook on things and keep trying!

    Best of luck,
    James

    Reply
    1. 16.1

      Gluten Dude

      Great advice James…thank you!

      Reply
  17. 17

    Allie

    I want to thank everybody for all of the kind words and great advice. It is nine months after I wrote this email, and I am doing pretty well. I have only been glutened once, and luckily I didn’t get too sick. I must admit that some days I just don’t want to do this diet anymore, but on those tough days I come back to this post and read all of your comments again. I am headed off to college in the fall, and am leaving my small rural town and going to a city where my GF options will expand exponentially. My little cousin recently had to go GF and I not only pointed her to this site, but this post. It was originally some of my long-time Celiac family members who introduced me to this site, and it felt great to do the same for her. You all are amazing, and I know for a fact that this community we have created for ourselves helps us all in more ways than we could ever imagine.

    With Love,
    Allie

    Reply
  18. 18

    Francesca

    My son is 10 years old, we was diagnosed at 8. He is in your boat. He is not the best at writing but I can assist him. I am his mother. And I can help the two of you to talk. I’ll send you an email.

    Francesca

    Reply
    1. 18.1

      Francesca

      Did not look away the date, wow. Nevermind.

      Reply

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