Once upon a time there was a little girl named Jena. Jena was troubled, unable to control her emotions. She was thought of as a “problem child” by her parents, teachers and doctors. It took years and a huge toll on her health, to get to the bottom of her real problem. For years she suffered from undiagnosed celiac disease. Now she is a 17 year old high school senior and I was lucky enough to speak to her and hear her story.
Me: Tell me a little bit about your childhood and what some of the challenges were that you faced.
Jena: Well I was usually very happy, but I acted out a lot. I got sick a lot and I would stay home from school. I didn’t like going to school. I was very aggressive and yelled. Acting out with my brother and parents, I was very physical. Which if you know me now, you know, not at all the way I am. I didn’t really know who I was, I didn’t know how to express myself. So it was hard, because it wasn’t me.
Me: Physically, did you feel off after you ate? Did you feel anything different, or did it just feel normal to you?
Jena: I think it really did just feel normal to me. When I was maybe 5, I was sent to the ER because they thought I had appendicitis. I had severe abdominal pain and then it went away within 2 days. That was actually how I was diagnosed 2 years ago. I was in the ER again with severe abdominal pain and it didn’t go away this time. So they finally reluctantly gave me the test for celiac disease and they said,”Maybe you should go see the GI doctor.” and from there I was diagnosed. I always had stomach aches and chronic headaches and we didn’t know what it was. There were a lot of headaches in middle school. I just didn’t feel right. I wasn’t really healthy.
Me: Did it effect your appearance in any way? Your skin, skin quality or your hair?
Jena: Not really. I was just pretty overweight. When I was little it was OK, but when I was in middle school, it got more intense. So now I’ve lost 35 or 40 pounds and I feel much better.
Me: Why do you think it took so long to be diagnosed?
Jena: I think my symptoms were so scattered and they didn’t all happen at the same time. Like, they thought the headaches were just light sensitivity or my mom gets migraines so they thought it was migraines. But it wasn’t that intense, nothing like what she has. And they didn’t really know about my anger and that the outbursts were a symptom. They just thought I was a troubled child.
Me: Did you have treatment for the outbursts and anger?
Jena: Yeah, I when to a psychiatrist that prescribed ADHD medication. Maybe 6th grade I think. Yeah, we worked a lot with that and ironically as soon as I was diagnosed with celiacs, I didn’t need to go anymore. Now I go every 6 months to get my medication refilled.
Me: So you’re still taking the ADHD medication?
Jena: Yeah, but we dropped it down. I do have some trouble concentrating in school, but it’s just who I am. I’m kind of all over the place. (Laughs)
Me: So, what would you say are some new challenges that you face now that you’ve had the diagnosis?
Jena: At first the diagnosis was very hard for me, especially dinner with my family. If they would have something that wasn’t gluten free and I had to have my gluten free pasta (because we hadn’t found any good brands yet) it was so disgusting and they were eating such delicious foods. That was hard. Or going out to restaurants and not being able to eat everything that I wanted to and them having a very small selection, or going to parties. I had to bring my own snacks and that was kind of weird. But it’s gotten a lot easier now. So, I’m kind of like, “Eh, whatever.”
Me: It’s getting better, the gluten free selection. I personally can not have wheat and it’s starting to move towards it being that I can’t have anything with gluten in it. So it is nice that you can get the better selection now.
Jena: What’s hard now is that I’m looking into colleges and I’ve had to check if they could accommodate me. It’s kind of stressful. So far it hasn’t hindered anything and I’ve gotten into the school that I want to go to. I’m glad because they can handle it, but the thought of me not being able to go to a certain college that I want to go to because they can’t accommodate my diet is… I never thought I’d have to think about that. I want to go to a school because I want to learn, not because I can eat there. But I’m going to school in New York and they are very aware. I’m going to be in Brooklyn.
Me: Congratulations, what are you going to major in?
Jena: Architecture.
Me: Wow! High five! (through the computer)
Jena: (Laughs)
Me: So, what kind of changes do you see in yourself in your daily life, now that you are taking a proactive approach to your health?
Jena: Well, I’m much healthier and I have a ton more energy. I walk like 5 miles a day. I love exercising. I didn’t use to. I have so much energy and I’m sleeping so well. I’m happy all the time. You’re never going to see me not smiling. I don’t act out anymore. I know how to deal with my feelings now. I don’t know if that’s just partly because I’m older, but definitely a lot of that was the celiacs. It changed a lot, I feel more… ME.
Me: How do you see your future now as compared to what it would have been without the diagnosis?
Jena: I think I’m a lot more spontaneous now, which is ironic because with celiacs it’s much harder to be spontaneous. It’s like, whatever happens happens, you know? I wasn’t as close to my mom and my dad as I am now, so that’s changed. I want to go to school closer to home, so I can be with them.
Me: Why do you think that is?
Jena: I think that I resented them a lot when I was younger. I thought that they were the reason that I was like I was. That they were causing all my anger. But now I know how to deal with it and we’re very close. It’s very nice.
Me: That’s so good to hear. Is there any advice you would give to other teenagers that are dealing with similar health issues? Somebody that might be feeling some of the same things that you were, but don’t know what’s happening to them.
Jena: Yeah, I would definitely say to advocate for yourself. With my mom, when I first started having the pain, she wasn’t sure if it was real pain, but maybe some subconscious thing. I took a couple of days to think about it and came back and said, “This is not subconscious, I’m feeling this.” Maybe if I hadn’t said that, I wouldn’t have gotten a diagnosis so quickly. And it was very important that I got the diagnosis when I did. You are going through what you’re going through and you need to advocate for yourself so that your parents know what’s going on and don’t minimize anything. You can put on a brave face, but you have to make sure that the doctor knows what your symptoms are. Tell them how much it hurts.
Me: Have you done a lot of research yourself or have you kind of left it in the doctor’s hands?
Jena: Well my parents both have their PhD’s in science and my mom is a nutritional scientist, so whenever a doctor tells us to do anything we do tons of research.
Me: You’re very lucky.
Jena: Yeah, my dad is very on top of things and my mom too.
Me: Well, that’s all the questions that I had, but I just want to say thank you so much. I think that your story is not going to help just teenagers and young women, but people of all ages who just go through this painful situation everyday. Some people who have celiacs don’t even have symptoms, so there’s no connection. If they don’t feel anything after they eat, they don’t know. It’s great that you have discovered this so early in your life and that you are able to control it now.
Jena: Yeah I’m very fortunate that it was a diagnosis, not like diabetes like my cousin has, where he’s dependent on insulin. It was just a diet change for me. It effected my life at the beginning, but now it’s just such a part of me I don’t even realize it. It’s been 2 years and a long road. This feels like the light at the end of the tunnel.
*I’d like to thank Jena’s parents for allowing me to interview their daughter and to publish the results on my blog.
http://celiacdisease.about.com/od/symptomsofceliacdisease/a/Silent-Celiac-Disease.htm