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Celiac Disease: A Teenager's Perspective

Celiac.com 06/03/2008 - I know—you are a teenager, you go out with your friends, see movies, have fun and unfortunately—have to eat with them sometimes too. I know because I’m also a teenager who is living with celiac disease, so I know what it feels like to have to say “I have an allergy, what can I eat, please try to avoid cross-contamination,” in front of all your friends. It is embarrassing and annoying—at least for me it is, and I am willing to bet that it is to some of you other teens out there too.

Miraculously I found a way to cope, and if you are just starting to get the hang of dealing with celiac disease I can tell you that it is not as bad as you think. I remember the first gluten-free pasta I tried. It was the most disgusting thing I had ever tasted. I still can picture my mom saying to me, “Oh, don’t worry I guess you will get used to it.” I thought that the satisfaction of eating a delicious meal would be gone forever. Luckily, I experimented with different products, joined the celiac boards, and learned which mainstream and gluten-free products were best. To my amazement, I actually found foods that I liked—and dare I say maybe some that I even enjoyed more than the “regular” gluten versions.

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The next step was eating out at restaurants. I still get scared when eating out because you really don’t know what they do behind those kitchen doors. Are they touching gluten and then touching your food? Perhaps they are accidentally even putting gluten in your food. The first time I ate out my heart was racing and my head was spinning—I was so nervous that I almost walked out of the restaurant. Fortunately, I spoke with the chef who knew all about the allergy and issues of cross-contamination. I felt confident in the chef. After a nerve wracking but delicious meal I realized that I had not eaten gluten. I also realized that I could eat out, at least once in a while!

Now, the hardest part, for me anyway, is ordering a gluten free meal when I am with my friends. I usually try to joke around and make light of the situation, while still making sure the waiter knows that I have a serious allergy and the chef needs to be attentive. Usually my friends and everyone else just say that they could never live without pasta and pizza and they don’t mind my long orders. Another tip for ordering out is to simply do like you would do any other time. Tell the waiter your problems, ask to speak to the chef, and pretend like this is any other gluten-free meal. There is no reason to be embarrassed about having to spend a little extra time on your order to make sure that you don’t get sick.

Yes, the disease is hard to deal with sometimes, but, for the most part it is easy to resist those gluten temptations by remembering what happened the last time you ate those items, and how you will get afterwards. If you are just starting out on a gluten-free diet, be patient and remember that you are not alone. Also, realize that you are special and that celiac disease is just a part of you that you will learn to love and have fun with. Soon, you will realize that it is not so bad after all. I honestly would not give up having this allergy because it is something I have grown to love—I am a proud to be gluten-free!

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12 Responses:

Melinda Ralph
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said this on
04 Jun 2008 8:51:29 AM PDT
I loved this article! I was 'officially' diagnosed when I was 17, so I know exactly what you're talking about. I, too, remember my first attempts at trying t find gluten-free food (Soooo Gross!). But now I know which ones to get and which to avoid. I definitely have a few gluten-free foods that I like WAY better than the 'regular' versions. Thanks again!

Hildegard Savage
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said this on
07 Jun 2008 12:35:05 PM PDT
Thank you, Alexandra, for writing this article. I especially liked the very last sentence. It must have come straight from your heart. It is the same way I have felt the whole 46 years I have been on the gluten-free diet. I was diagnosed at 38 years of age and am now 86 years old. No wheel chair, no walking all bent over. No serious health problems. Just a little arthritis, and I don't hear so good anymore.
My best wishes to you, Alexandra, for a wonderful future!

Rosalind Q. Spiller
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said this on
08 Jun 2008 10:10:23 AM PDT
Great article. I'm passing this to my teenage grandkids (none diagnosed yet, but I know they're concerned with their moms and grandmother having to be gluten free). Thanks!

Glyndell Houston
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said this on
11 Jun 2008 7:03:48 PM PDT
Alexandra, Thank you for your encouraging article and positive attitude! You go girl!!

Michele Arthur
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said this on
12 Jun 2008 12:16:06 PM PDT
All three of my teen aged children and I have Celiac disease and I applaud your embracing of the situation. They too have experienced the type of nervousness you describe, especially when going out with friends or going to a friends house for an event. However, they have been quite pleased to find out that most of their friends have accommodated their 'weird' allergy and go out of their way to consider their needs. They also usually pack a snack or two in their backpack or bag 'just in case'. Generally, it's about the getting together, not about the food when you're with friends. Good luck! By the way, my oldest son went away to college and had no problem at all. The cafeteria created gluten-free food that was actually good tasting and other students chose the gluten-free food even though they didn't 'need' to eat gluten-free! Overcoming the fear that others have of the unknown is done one step at a time...rock on!

dawn puddester
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said this on
16 Jun 2008 12:43:44 PM PDT
Thank you for this article. My daughter is a teenager and has been gluten free for 12 years and its so refreshing to hear these words from someone who knows first-hand the challenges of being a gluten free teen. You're very thoughtful. Thanks.

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said this on
23 Jun 2008 4:10:25 AM PDT
I have two children with celiac disease (age 10 & 17) who were diagnosed in 2000 and 2001. We have experienced all the same issues. Both my boys will throw up with the slightest ingestion of gluten. I think the most important thing we have learned is never stop doing the things everyone else does. My older son went to Quebec City with his school for 4 days when he was in grade 8. He brought a cooler on wheels with extra food and all the restaurants were forewarned about his disease. This spring he went on a 3 day outdoor ed camping trip. His whole group ate gluten free (except for pasta). The boys in his group decided it would be easier if they didn't bring any bread, cereal or bagels. The best part about this was that it wasn't my son's idea...but the groups! I have even watched some of my son's friends stick up for him when kids try offering him something he can't eat. My younger son has lived with this disease for almost his whole life. He used to get sad when he couldn't have some of the food other kids were having....but now he knows and understands how sick that food makes him. Also, growing up gluten free for them has gotten easier and easier over the years. Many restaurants offer gf menus. Leory Selmans in Florida even offers gluten-free beer! We live in Ontario Canada and one of our large pizza chains now offers gluten-free pizza at every store.

Erica Lynn
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said this on
28 Jun 2008 5:15:24 PM PDT
I really enjoyed reading this article. I am 17 years old, and though I have not been officially diagnosed with celiac disease both my GI doctor and I are confident that I am gluten intolerant (as of late fall of 2007). Sadly yes this does makes it difficult to eat out with friends, but I manage to do pretty well at it, and thankfully they are pretty understanding. I think the hardest part for me is going to be at meets and such during cross country and track season. I am actively involved with these two sports and when we travel, I don't have a choice in where we eat. Hopefully I will be able to bring my own food perhaps. Our coach also pushes us to carbo load. Every night before a meet we would chow down on a ton of pasta, breadsticks, etc. I am guessing that this may have contributed to my development of gluten intolerance. I am not sure how everything will work out yet, but I am hopeful. I look forward to reading more articles like this from others my age. I have yet to meet someone who is gluten intolerant or celiac who is about my age. It can be quite lonely at times...

Jake Rosenberg
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said this on
16 Oct 2008 10:25:35 AM PDT
I too know what it is like to live a gluten-free lifestyle. This was a very well-written article, and your inspiring words moved me deeply. This has helped me turn my life around. Thank you.

Mrs. DeGeorge
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said this on
06 Oct 2009 12:05:47 PM PDT
In writing your recommendation, I came across your entry for celiac.com, so I thought I would read your article. I continue to be proud of who you are. Your honesty, humor and sensitivity shines in this article. Thank you for sharing it with me and all of the teens who could benefit from your insight and the responses that followed.

Alexandra Isom
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said this on
23 Sep 2010 2:38:15 PM PDT
Holy cow. I read this and I was like wow that's exactly how I feel haha. I was diagnosed freshmen year of high school on spring break fantastic time eh? Well I also had that whole this is nasty why me I hate this it sucks it will never get better for bout 3 months afterward. I was depressed and angry and just indifferent! Finally people started helping me and now I help people I'm so proud to help but I also still sometimes feel like ugh why me and get down, but I remember when I get older to help many people because I know what it feels like to be 15 (at the time) and have to worry bout everything you do because of a dumb "allergy". Thanks for writing this article I wish actually that someone my age was at my school who had it but so far only me. It would be nice to connect with someone on this level then they really could "know how I feel"!

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said this on
08 Jan 2012 7:03:34 PM PDT
I'm glad that other teens feel the same way that I do! I was diagnosed when I was 13 and now I'm 17. It's been really hard and I've had several trips to the hospital. My mom also has it and so do two of my friends. People sometimes tease me about it and put food in my face that I can't eat. But some of my friends buy me food all the time which is really cool.

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That's a great question to ask. Thanks for arming me with good ones. I'm doing my research to be able to stand my ground. Ironically, my endo. Was the most helpful doctor I'd seen and my GP has generally not seemed to have a clue. I have PCOS and Hashimoto's thyroiditis, when I moved to the area and saw him, he was resistant to refer me to an endocrinologist (before I moved to the area, I'd already been seeing an endo. For three years for follow ups since I'd been diagnosed.) My endo. Was able to treat the thyroid antibodies well, they went down without synthroid or surgery (which previous doctor's had suggested). However, I think she dropped the ball on the Celiac blood panel (which I think endos should Definitely be more aware of). And my GP seemed much more aware on this issue. I think the takeaway is always do your research, advocate for yourself, and let second opinions fill in the gaps in knowledge some on your care team may have. (But also, ditch them if they don't know what they're talking about) Also, I live in an area with a doctor shortage... Thanks for the welcome to the community!


Silk Cashew milk is pretty creamy and close to dairy milk, I love Macadamia milk, almond milk is a tad thin in most brands but a good sub and normally enriched with calcium, vitamin D and E. Coconut milk is a bit acquired and can range greatly in consistency, rice milk is normally very thin like 2% school carton milk and bland. Elmhurst Harvest has started making SUPER rich and creamy milks with walnuts, almond, and macadamia nuts, with talk of bringing back the pistachio milk. I personally love the almond and cashew blends from blue diamond or silk. If you need a nut free version Good Karma makes a decent flax milk. There are a few other brands out there that make some good ones here locally I love the HEB Organics almond milk best almond milk I have ever tasted rich, fulfilling, and just perfect. NOTE, avoid the shelf stable versions from almond dream, cashew dream, blue diamond, silk, HEB they are normally much thinner and bland. Cheese, On block cheeses Dayia makes a good Havarti, smoked Gouda, and cheddar. the shreds from there are pretty bad in taste. Follow your Heart makes a great provolone and decent on everything else. Lisanatti makes godly good shreds for jalapeno jack, cheddar, and mozzarella, they melt better then real cheese as they lack the greasy oil mess. Their blocks on the other hand are way to soft. Julian Bakery makes a passable mozzarella but only if your melting it over something or in something the flavor and texture is off but it is the only cheese I found you can order on amazon lol. Kite Hill makes some really good soft cheeses, I tried a few others like hedei ho and found they are too salty or the flavor way to off to even call cheese. Ice cream there is Nada Moo, and So delicious for some of the top dairy free ones. I personally can only have one called wink which is a unsweetened one. Yogurt the So delicious and kite hill take the top in my opinion but they are the only ones that make a good unsweetened so I can not comment on others. I make my own parmesan and cheese sauces from scratch myself from various ingredients. Even make my own cheddar biscuits and cheesy garlic breads. Hell just made a batch of cheesy cheddar and chive biscuits this morning, OHH the buttery goodness of Nutiva Butter flavored coconut oil I love cooking with, sauteing, and using in savory foods. last week I found it was great with carb free noodles and herb seasoning. I am thinking of using it in my cauliflower Alfredo sauce next time also.

From what I've read 2 slices a day should be enough for the challenge. I think they'll have more gluten than the milky way's. Now I want a milky way Have one for me tomorrow dalek100!

Did you ever figure out what corn gluten is in? I can not find any information