Teen Advocates with Gluten Sensitivities

Our Mission: Gluten Sensitive Teens advocating for positive support and awareness for themselves and others.

Our Stories

                                             Amy's Story 

                                          


            My name is Amy. I am 15 years old and I am a sophomore in High School. I am a typical teenager, I love doing everything every other teen does, except the only difference is that I have Celiac Disease. I have been living on the gluten-free diet since fifth grade. My story is not the typical story; my diagnosis is not the typical diagnosis. This is my story.

 
           
I was constantly sick as a child. I caught anything and everything. If someone got sick, I tended to catch it. When I was in fifth grade though, I became sicker than I had ever been before. I had this cough that would not go away. At first they thought it was my asthma acting up. They gave me steroids and nebulizer treatments constantly, yet I didn’t get better. I was missing a ton of school and keeping up was difficult.

I saw numerous doctors; none of them could figure it out though. One doctor accused me of it being all in my head. I was growing more and more frustrated by the fact that no one knew what was wrong with me. My pediatrician had been on maternity leave, and it wasn’t until she returned that we started getting some answers. She had just been to a conference where they were discussing Celiac Disease and at the same time my Mom had been researching Celiac on the Internet. She knew that every other thing they had tested me for came back negative. They hadn’t mentioned chronic cough as one of the symptoms, but she and my Mom thought it was worth a shot to test me.


            I went back to see her about a week after having the blood test, and she told me that I had tested positive for Celiac. My Mom started crying, and then I did. I had no idea what Celiac was, but seeing my Mom cry made me nervous. I didn’t ask any questions about it until we got to the car. My mom told me she was crying because she was happy to finally have an answer. They sent me to a gastroenterologist to have my endoscopy done, because that was the only way to confirm it. They pumped me full of gluten before the endoscopy to help the doctors be able to see if I tested positive more easily. I was so sick by the time they did my endoscopy; I thought I was going to explode. The results were there the second they did the endoscopy. Sure enough, I had it; there was no doubt about it.

            
I am going to be perfectly honest. No one wants to hear that it was no big deal or that it was easy. It wasn’t, I absolutely hated it! I was mad at my parents for making me follow the diet. I hated the food. I thought it was one of the worst things I had ever tasted. My parents made me follow the diet though, and eventually, I learned to accept it. I realized that I needed to follow the diet if I wanted to stay healthy, and that was enough to give me the will power to stick with it. I tried lots of different foods until I found ones that I liked.


            While not being able to eat whatever type of food I want, or what everyone else is eating, is still hard for me at times, I know that in the end, it is worth it to stick to the diet. I know what it was like to be sick and have gluten, and now I know what it’s like to live without it and be healthy. At the moment, I am one of three known cases that my gastroenterologist has heard of, where a cough was the main symptom for Celiac. Since being diagnosed, my cough has been manageable thanks to my gluten-free lifestyle. I still have a low immune system because of my Celiac, so I still tend to catch things constantly.


            I haven’t known anyone with Celiac or a gluten intolerance that was my age up until now. I had gotten an email around October asking if I would be interested in starting a teen group. I jumped at the chance of meeting other teens going through the same things as me. TAGS had been an amazing experience so far. I have met other people my age who have the same thing as me. I am so excited to see where TAGS goes.


             
I know having Celiac and gluten intolerances is hard. I know it’s a pain to stick to the diet. I know it sucks going out with your friends and not being able to eat the same thing as them. I know it’s hard going to parties and having to eat before it or bring your own food. I know it’s frustrating to have to try to explain it to people who have no idea what it’s like. I know it isn’t fun, and I know it’s hard sticking to it. But, the reality is, if it makes you feel better, isn’t it all worth it? I know it is hard trying to go through this on your own. Hopefully, this site can help you realize you aren’t alone. 

             Remember, Celiac doesn't define you as a person; it is only a small part of you. Don't let it hold you back from doing the things you love to do and enjoy doing.

                                       Kelsey's Story

 

  
   Hi, I'm Kelsey and I'm 14 years old. I was diagnosed with Celiac Disease when I was 4. For the first couple of years it was really hard.  Finding food I could eat, finding food that wasn't ridiculously expensive. It took a while but now my whole family is comfortable with it. 

    
When I was diagnosed I was in preschool. I didn't really understand what was going on. I didn't understand why I couldn't eat the food I used to eat every day; it was all so confusing. One thing that I did know was that I was feeling a whole lot better.  However some of the food my parents found that was ok for me to eat, I have to say it was very gross!  It was nothing like the food I was used to.

    Finding food was incredibly hard. In the Seattle area there were like two stores we could get GF food.  Since my mom couldn't find much food that was good and affordable, she decided to make it herself.  Then, it was my turn to bring snack to preschool and they wanted bagels. My mom decided the first thing she would make GF would be bagels (not one of her best ideas). Bagels are really hard to make and making them GF is even harder. She started and everything was going fine and then when she took them out of the oven something was wrong. They were a hard as a rock! She had no idea what went wrong and to this day, we still don't.     

    That moment was when my mother realized being gluten free is going to be the hardest thing anyone one in my family has ever done.

                                   Mari's Story

                                                                     

 Gluten. Who knew that such a simple world would drastically change the course of my whole life? The diagnosis of Celiac disease may be devastating for some people, but for me, it was a blessing. When all you know is pain your whole life, the prospect that it could all go away with a diet change seemed like a miracle to me. I was diagnosed when I was 15 years old, but my story isn’t a short one. Since day one, my life’s been a roller coaster ride. In telling you my story, my hope is that people out there never give up hope on finding a better future. Keep searching for those answers, because some day you’ll get them, and when you do, it’ll all have been worth it.

I had symptoms from a young age. When I was little I always had trouble with the food I ate. I had patches of eczema all over my face and would projectile vomit whenever I ate. I probably looked like the exorcist child; my mother just waiting for my head to start spinning. I’ve been told that I could throw one heck of a tantrum too. I would scream bloody murder and bang on anything that got in my path. I had horrible night terrors and would wake up shrieking in fright. I was told that that’s when my mom knew I’d have problem with food.

I was on a gluten and dairy free diet for a small time when I was a child. My symptoms seemed to improve but then my parent’s got divorced when I was four and my food options changed. My dad would feed me the real stuff, and you know once you’ve tried real bread and cheese that’s not rubbery , there’s no way you’re going back. So life went on as it does, and I went back to the foods that where unknowingly poisoning me.

Life seemed to be moving along just fine until the age of nine, that’s when everything started. I began having fainting episodes that escalated throughout the years. I battled with severe migraines and headaches that I couldn’t rid myself of. When I started 7th grade I began to have major problems. I would be passing out right and left and experiencing extreme chronic dizziness. Still to this day I can’t describe the strange neurological sensation gluten had on me. I suffered from chronic panic attacks, multiple times a day. My throat would get tight, the room would pull in, and my head would spin. I couldn’t make it through a full day of school without collapsing. It was difficult for me to leave the house because the world would feel like it was moving, information wouldn’t register right in my brain; I always felt like I was going to fall over and pass out. Daily life became extremely difficult. I suffered from extreme fatigue and I always felt weak and tired. I always felt bad because I didn’t have the energy to hang out with friends, talk on the phone, socialize, and be a part of anything. It was literally all I could do to roll over and grab the remote; it was exhausting. My head felt like it was going to explode and there were little construction workers drilling into my brain. I couldn’t sleep, ever. As long as I can remember I’ve never enjoyed a good night sleep. It would take me at least two hours to fall asleep, if I was lucky, and I’d wake up three or four times a night. I couldn’t dream, I couldn’t sleep. As I got older the symptoms kept growing. My fainting spells would be accompanied by a mild seizure. My stomach hurt all the time. I would roll over and curl up because the pain was so bad. My stomach pain only became worse and worse, and continued to follow me till this point.

Let me tell you, if there’s a test out there, I’ve had it. I stared visiting all kinds of specialists. I saw a neurologist, cardiologist, GI specialist, ear specialist , natural path, acupuncturist, pretty much anybody that might be able to help. I’ve had four straight years of test, after test, after test. I’ve had an EEG, EKG, MRI’s, CAT scans, I wore a heart monitor for a month, I’ve had an endoscopy, colonoscopy, fructose test, and let me tell you the list keeps going on and on. You hit a point after four years where enough is enough. You’re tired of being sick, you’re tired of tests that don’t tell you anything, and you’re tired of not having answers. I started eating a wheat free/ dairy free diet about a year and a half ago because I knew as a child I had some problems with food. Going on that diet helped some, but I still didn’t feel 100%. I went from a 40 to maybe a 60. As a lot of us know now, wheat free and gluten free are much different. I didn’t know that then, and I didn’t know to what lengths one must go to protect themselves from gluten.

Since I started eating differently, my biopsy’s came up negative and I was still stuck in this vicious cycle of unknowing. I was running out of places to look, and the pain and the problems where still ever present, knocking on my door. Salvation finally came though, just in a very unconventional way.

We had seen a new neurologist several months earlier (the first one I saw when I was younger was horrible! He wanted to put me a seizure medication…thanks, but no.) and he had been talking about me having low serotonin levels in the brain…..right. I’m a very natural, organic person, and I don’t believe in shoving medication down your throat to solve unknown problems. Of course, I wasn’t going to take any high intensity drug to regulate my "serotonin problem" if I didn’t even know I had one. My dad went on this whole kick about, "you need to do this" and "you’re serotonin that". Let’s just say drugs aren’t up my alley. Finally we came to an agreement and I told him I would consult with a natural path and see if I could improve serotonin levels with different foods I ate. Of course, being my wonderful self, I had another fainting episode right after spring break and got to go to the doctors…again. Yeah. We went and saw my pediatrician and my dad started on his serotonin kick again. My doctor gave me a referral to a nutritionist to see if I could get help managing serotonin levels with food because I was being deprived nutrients from the wheat and dairy I was eliminating. Needless to say it was the nutritionist who diagnosed me, without all the tedious poking and prodding.

Since my diagnosis I’ve been making remarkable improvements. I’m awake and alert, my stomach and head don’t hurt, I’m not falling over all the time, and most importantly, I feel better than I’ve ever felt before. I hope that all those teens out there see their diagnosis or intolerance as a positive thing. Gluten is something we can control. By changing the way we eat we can live a better, happier, and longer life; feeling the best we’ve ever felt along the way. A gluten free lifestyle can be challenging at times, but at the end of the day, it’ll be the best decision you’ve ever made.