Some Friendly Advice from a 14-year-old Celiac

celiac advice

I just woke up from my Thanksgiving food coma. Let me know if I missed anything.

While I LOVE getting emails from all of my fellow celiacs, there’s something special about receiving one from someone who’s much younger than I am. It’s a reminder that this crappy disease affects people of all ages and it’s always enlightening to hear experiences and advice from young adults.

I received the following email from a young woman with a bright future ahead of her. While I never share names from those who email me, I am making an exception is this case. Her first name is Celiac and her last name begins with C. That’s right Celia C. You can’t make this stuff up.

Anyway, here’s some wonderful advice from an awesome celiac.

Hey Gluten Dude! First off I’d just like to clear, Celia C is actually my name. Ironic, I know.

I’m 14 and your blog has been the most helpful Celiac resource for me since I was diagnosed in April of 2012. I underwent countless tests, and was turned away by countless doctors before somebody decided to give a darn about my problems. I was finally diagnosed with celiac, IBS, GERD, and Generalized Anxiety Disorder. All of these problems were the effect of constant misdiagnosis.

Despite being an on an extremely strict gluten free diet, I’ve suffered with symptoms far past diagnosis(warning: rant ahead).

I had an incident at Wendy’s just a few days ago. Generally, Wendy’s is my “safe” fast good place, as long as the workers change their gloves before handling my plain meat patty in a container (gourmet, right?) My brother explained this to the staff the other day as he ordered my usual for me.

What did we get? Well, the plain burger. On a bun. No gloves changed. My brother called them out and the incompetent worker went to her manager who, thinking we weren’t paying attention, TOOK THE BUN OFF THE PATTY, put it in a container, and gave it to me. My brother, needless to say, freaked out. And even after getting a replacement, my anxiety took over and I felt sick over eating it anyway.

Now, I’m already a teenager that seriously has the health of an old woman. I certainly don’t need a moron to mess up VERY specific directions and make me even more sick. I was angry, and mortified at the attention I had drawn.

I’m sorry if this has gone to a pity party, but I just want to warn the public to always keep a watchful eye. Some people are extremely ignorant to the struggles we face. It’s sad that people my age and younger have to think about cross contamination among other things. (For example, I want to work for the FBI when I’m older and it pains me to imagine how I could ever manage doing so in a health state like the one I’m in now).

I hope this can help someone, anyone. To realize that we are all in this one together, and that no matter what the age of the Celiac, our struggles are more similar than anything.

Thanks for listening to my rant. Hope all is well!

Such a great letter. Since you were so cool sharing your advice, I’ll share some of mine with you:

  • Don’t give up on your dream of working for the FBI. The fact that you have a dream at your age is so friggin’ awesome. At 14, my dream consisted of talking to a girl without breaking into a cold sweat. I’d say you’re one step ahead of me.
  • Smart move not eating the burger. It’s never worth it.
  • We all need to be diligent no matter where we eat, but eating at a fast food joint is even more of a risk. Tread carefully.
  • Very cool that your brother has your back like that. Give him a fist-bump for me.
  • Keep spreading the celiac word. We need people like you in our community.

Happy Tuesday everyone!

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17 thoughts on “Some Friendly Advice from a 14-year-old Celiac”

  1. What a brilliant attitude she and her brother have, and so young! I think we all know what a pain that is!

    I had trouble in a Korean restaurant here in Dublin called Kimchi Hop House. They had several things marked as gluten free on their menu but failed to change their menu’s when they stopped making most of the gluten free items.

    It was only when I asked about gluten free soya sauce the server told me I couldn’t actually eat the things I was ordering so I just ended up getting sushi. They even brought me the wrong soya sauce (the gluten kind) but I was lucky I was watching them!

    It’s such a pain because I really liked the restaurant. I got pretty mad and I think the manager wants to give me a free meal after I complained, but I really can’t bring myself to go back. I get really bad anxiety too (not as bad as I used to, thankfully!) and I don’t think I could eat the food!

  2. I had this same exact thing happen to me when ordering for my then-toddler age daughter. We, were at a fast-food joint probably in 2000 ish…. and after I complained that they messed up the order by putting the burger on a bun, I watched someone in back take the patty off and put it in a container.
    I complained again and the worker threw the food away in disgust and only then did I get what we were requesting. I was livid.
    On a lighter (eye rolling) note: years later we went to another fast food place when we were on a road trip. They were so confused by our request for a cheeseburger “plain with no bun”….that we actually received a bun only (no meat or anything) wrapped up and delivered through the drive thru. We have learned you never leave the drive thru window until you have looked at your order!
    Nice post!

  3. If I may, I’m not one to be so demanding of fast food joints and workers making minimum wage for each hour management graciously affords them. Not with my health risk.

    Want your cilia to thrive, Celia? Get rid of the grey fog around your grey matter? Get your gluten load down. Way down.

    1. Thank you El Hefe. It might behoove people to try to remember that celiacs make up a small minority of the population, and so regulators can’t be made to care adequately. But calling fast-food employees “morons” isn’t the best way to set that straight.
      I can tell you as a member of the restaurant industry that most of us try very hard to provide accurate info and food choices for everyone., but sometimes we fall short. But I can almost guarantee you that it benefits you to not walk out in a huff and cross a good restaurant off your list when you can try to form a trusting two-way relationship with the owner or manager, and have satisfactory treatment from then on out.
      Finally, I know it is difficult managing food-related illnesses and allergies: I have two. But when you decide to eat at a fast-food restaurant in spite of this, you really aren’t making the wisest choice.

  4. GD-

    You look good as Wendy, just don’t go all Bruce Jenner on us. Just sayin’.

    CC-You and your brother frigging rock. You realize, just by doing what your doing, you are helping the rest of us in our fight, thank you for that.

    Jersey Girl

  5. As someone who worked in fast food for several years in my youth, it’s never worth the risk. Those restaurants are just not set up to give safe service to a celiac. There is nothing in place to prevent cross-contamination even if the food itself is safe. It’s better just to cross them off your list and move on.

    And Celia – you rock sister! With your knowledge of your health and that determined attitude, there’s nothing you can’t accomplish.

  6. CC – never settle when it comes to your health. I know it is very upsetting but never even give it a second thought that you “draw attention” to yourself when you are making sure you are safe. As one of my BFFs said to me “you are not high maintenance, YOU ARE WORTH IT!!!” I know it is very, very frustrating but focus on the positive choice of you making a decision that honours you and your health. Anger and/or feeling like you are a nuisance only adds to your stress which you don’t deserve. You have celiac you are NOT celiac. You are a beautiful young woman who can do whatever you dream in life.
    ps – burger dude is a total moron

  7. Wendy’s used to be our “safe place”, too, when we needed fast food (we are on the road a LOT, as my kids are working actors). Sadly, one of our recent experiences (we only ordered fries! No burger, not even sans bun!) resulted in a cross contamination gluten inn of my son. We were at the Palisades Mall in Myack, Ny. It shattered my sons faith in the one place we would count in to be able to grab a bite and be on our way. 🙁

  8. Don’t worry Celia, feeling like an old woman will eventually go away! The first year or so after my diagnosis I felt like I was at least 90, but with time and healing I’m back to feeling my age. Keep fighting for your health!

  9. From my experience, there are other “fast food” places that are far safer than Wendy’s. Try “Five Guys”. They will make you a burger to die for loaded with everything that you can eat with a fork and knife. Just specify that it needs to be gluten free. Also try “In ‘N Out Burger”. Ask for the “Protein Style Burger”, and specify that its for a “gluten allergy” and they will keep you safe. Their fries are not contaminated because they don’t fry breaded chicken or breaded onion rings. It’s safe, fast and cheap. I’m not advocating eating here all the time, but once in awhile a burger and fries is a real treat for a Celiac.

  10. I had a similar experience at Red Robin in February. They are usually so careful and understand the cross-contamination issue. Well, as soon as the bunless burger was put in front of me I could see it was covered in sesame seeds and crumbs. Somebody had removed the bun! I am so fortunate I noticed it. My replacement meal only gave me a headache for a few days which is way better than the original meal would have done for me! (Plus I got it for free).

    Your advice to always keep a watchful eye is smart and that’s great you and your brother let the restaurant know that what they did was NOT okay. I need to remind myself of this sometimes but don’t be embarrassed for “drawing attention”. You only get one body and it’s worth protecting, even if you find yourself in a slightly uncomfortable situation with a Wendy’s employee 😉

  11. Don’t eat the fries at Wendy’s. They have a big poster on the wall leading to the restrooms that list all the allergens.

  12. I also was diagnosed with celiac 2 years ago at the age of 13, and I know the struggle. I’m now in high school and on a volleyball food stop at Taco Bell, I noticed the cross contamination and freaked out a little and everyone said I was over reacting. It’s hard at this age.

  13. Fast food = cross contamination ALWAYS. I have learned to pay less attention to what I should not eat, when in doubt, chuck it out. but to eat only those foods i know my celiacs will ignore. Think YES, forget NO or even MAYBE! Live with a cooler by your side. Wendy’s chile is supposed to be GF ( sometimes)

  14. Celia you rock. And when you join the FBI they are going to be so lucky to have you. You can and will do it. I met a woman a while ago who had no arms and very short leg stumps and she works on the police force. You have that kind of guts and brain. We will be fighting to keep your food safe and you will fight to keep us safe seems to me like a really good deal!

  15. Ah, memories of Wendy’s…Shortly after my 1st grader was diagnosed with celiac disease last year, we had been making long trips back and forth to the hospital while another of my kids was having back surgery. We stopped by Wendy’s and I tried to explain in the simplest way possible what we needed: a chicken breast–no bun because we were “allergic” to wheat. The cashier very cheerfully told me that everything there was okay since they did not have any wheat buns. She then explained, “We only have white.” I was so flabbergasted my eyes probably goggled at her a while, and then I had a pretty good laugh about it despite it all.

    From my experience, being very nice and sweet to folks is key to getting what you want without any bad feelings on both sides. That doesn’t mean you can’t be firm and a stickler when necessary. Most folks are pretty understanding and willing to learn. I enjoy explaining what celiac disease is to folks, what we can and can’t eat, and why we have to have foods prepared in certain ways. There are now a couple of restaurant managers who understand our needs and are able to prepare my son’s food correctly and even make special meals off the menu just for him. Yay!

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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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