Going Gluten-FreeSeptember 19, 2012

Empowering Our Kids

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Posted by Alicia Woodward

This terrific photo caught my eye this week—a little boy dressed up as a super-hero, standing tall and smiling like the sky’s the limit.  It captures what we all want for our youngsters with celiac disease and food allergies: strength and empowerment.(The image was originally posted on AllergyHome.org, a free website created by our friends, allergists Dr. John Lee and Dr. Michael Pistiner.)

I recently interviewed three children with celiac disease (ages 8 to 11 years) who illustrate these qualities. The Q&A article was published in Living Without’s Oct/Nov issue. Their candor and optimism about what it’s like to live on a special diet is impressive. They have can-do attitudes about their gluten-free lives.

We asked Maddie Diehn (age 8) of Black River Falls, Wisconsin, and siblings Austin (age 11) and McKenna (age 8) Juhnke of Fargo, North Dakota, to talk about living with special dietary needs.

Living Without When were you diagnosed with celiac disease? What was it like for you to find out?

Maddie I found out when I was three. I felt really weird because I didn’t know what it would be like. I’m the only one in my family with celiac disease. But I don’t feel weird anymore because I know more about it and my friends help me by getting gluten-free stuff before I come over to their house.

Austin I found out when I was only 18 months old. Being gluten free is the only thing I know.

McKenna I was 6½. It made me sad because I couldn’t eat any of the foods that I liked.

What does it feel like being sick?

Maddie It feels really weird to just have like a cramp in your tummy. It feels different to be healthy one minute and sick the next. It’s hard when I’m sick for people to know what I feel like because it’s like a cramp but it isn't.

Austin Horrible. Not fun at all. I feel like I have the flu when I eat anything with gluten in it.

McKenna I remember that my legs hurt for a long time. It hurt to sit and to stand and lie down. My stomach started to hurt after that.

What do you find difficult about having celiac disease?

Maddie Sometimes people don’t understand me. People don’t know that I can’t eat some foods and are not ready for me to visit and I have to explain what celiac is. I feel different at parties because people don’t know that I can’t eat a lot of foods.

Austin You can’t eat all the foods that you might want to try. Going to restaurants is hard even if they have a gluten-free menu because there is always something else that you want to have but aren’t able to. Sometimes people will make fun of you or make comments about you having to eat “special” food. People need to know that I am just like them and can do the same things except I have to eat gluten free so I don’t get sick.

McKenna Not being able to eat different foods that I see friends eat. Always having to ask if I can have it.

What have you and your parents learned about celiac disease so that it doesn’t seem so hard?

Maddie I don’t think it’s hard that I have celiac disease. It doesn’t matter to me. It’s not hard to find food if you know where to look. We know where to find gluten-free foods at the grocery store and the restaurants that serve gluten-free foods.

Austin Knowing what foods you can and cannot eat over the years. It has gotten easier. Knowing that we can still go out and eat at restaurants just like everyone else.

McKenna That there are certain foods that I can’t have. To be very careful before I eat at someone's house. It’s easier to eat at home because we have a special gluten-free cupboard and I know that I can have anything in that cupboard.

What do you still need to work on, things you and your family could do better?

Maddie: I think if I found more foods I like it would be easier for everyone in my family. I can still find foods online.

Austin For my parents, just making sure there is more variety of gluten-free foods in the house.

McKenna That I don’t get so upset when there is something I cannot have and accept what I can eat.

What’s your favorite gluten-free food?

Maddie  I like homemade gluten-free treats like my grandma’s cheesecake, peanut butter balls, rice crispy treats, caramel corn, carmalita bars and scotcheroos.

McKenna Macaroni and cheese and chicken alfredo.

Austin Macaroni and cheese and pizza.

What is the best thing about having celiac disease?

Maddie I think it’s cool having celiac disease because it makes me one of a kind. But if I never told anyone about my celiac, no one would know I have it.

Austin That you don’t have to always try new foods that you may not want to when going to other people’s houses. That you are still able to go to summer camp with other kids and not worry about getting sick. Also, being able to meet other celiac kids at camp.

McKenna The best thing about having celiac disease and eating gluten free is that I feel better.

What would you say to another child who just found out that he or she has celiac disease? What advice would you give?

Maddie I would tell him or her some yummy foods that I like, which are gluten-free pizza and tacos. I would also tell them some of my favorite restaurants like Bunky’s in Madison, Wisconsin, or Pizzetta in Mystic, Connecticut. I would tell them to look around for good restaurants that have gluten-free food.

Austin That you can still have your favorite foods. They just have to be made a little differently. That you are still are able to do all the things you like to do. Having celiac disease or having to eat gluten free does not make you different. It just helps keep you healthy to do those things. It’s important to always ask if it is gluten free before you eat something

That it’s not that bad. It gets easier finding foods that you like.

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