Stories about: celiac disease

Celiac disease is not an allergy … and other misconceptions

Teen with Celiac disease eats cookie

When my younger sister, Abby, was 2 years old, she became extremely anemic, had a heart murmur and was frequently in pain. My parents took her to Boston Children’s Hospital, where they diagnosed her with celiac disease. Since it’s a genetic disease, we all got tested and I tested positive. That was 12 years ago, when I was five.

Today, I look like a normal teenage girl and if you saw me on the street, you would never know I had Celiac disease. I try to remember this when I see people or meet people for the first time — you never know who has an “invisible” illness like celiac disease.

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Celiac disease: 5 things parents need to know

celiac-disease
Dr. Dascha Weir, associate director, Boston Children’s Celiac Disease Program

It may be difficult for parents to hear that their child has a chronic illness. When the diagnosis is celiac disease (CD), an autoimmune disorder caused by an intolerance to gluten, there is good news. CD is treatable by changes in diet.

How it works: When food enters the stomach, it’s broken down into tiny digestible particles, which then travel through the small intestine. The small intestine is lined with villi — tiny finger-like projections that absorb nutrients from the food passing through.

In celiac disease, gluten, which is a protein found in wheat, barley, rye and oats, damages the intestine and causes the villi to break down, leaving a flattened lining that can no longer absorb nutrients as effectively.

Dr. Dascha C. Weir, associate director of the Celiac Disease Program in the Boston Children’s Hospital’s Division of Gastroenterology, Hepatology and Nutrition, discusses the disease and offers tips to help families recognize and manage the condition.

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No gluten, no problem

Abby and Emma eat gluten-free.

Twelve years ago – at ages 5 and 3 – we were diagnosed with celiac disease. This means for the rest of our lives, we can’t eat any gluten whatsoever because it damages our intestines and we become really sick.

Celiac disease is a lifelong intolerance to gluten, a protein found in wheat, barley, rye and oats contaminated with gluten from other products. In people with celiac disease, gluten damages the lining of the intestines. This can prevent them from absorbing nutrients and cause a variety of other symptoms. CD is always treatable by changes in diet.

Some people don’t eat gluten by choice, but for us, there is no cheating with our diet. It only takes a breadcrumb for us to get glutened, and then we vomit continuously for hours.

Trust us, it’s not pretty.

We were really too young to remember life before celiac, but our parents say we were tired, crying and constipated a lot.

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Staying active with celiac: Tips from an Olympian

By Katherine Ramirez

Amy1Amy Yoder Begley is a middle and long distance runner whose talents took her all the way to Bejjing to compete in the 2008 Olympics.  She’s also a person with celiac disease.  We recently caught up with Amy to learn more about her journey- from diagnosis with celiac disease to racing on the Olympic track.

Thriving: Before the diagnoses, how did the symptoms of celiac disease affect your running

Amy: I would have bloating and stomach aches.  I had a full ride to University of Arkansas and I was expected to perform but I was doubled over in pain at practice. I kept thinking, “What is wrong with me”? My coach would take me to the doctors but they could not find the source of my pain. They suggested everything from ovarian cysts, to colitis, to lactose intolerant.  My diet was scrutinized daily.  I made the suggested changes but I still couldn’t run more than 30 minutes without using the bathroom, (which made running 5ks extremely difficult!)  I couldn’t even eat within 6 hours of running. It really affected my performance and all I could think was, I’m a healthy person, what am I doing wrong?

TH: Once you were finally diagnosed with celiac, how did your physical performance change?

Amy: Once I took gluten out of my diet the transformation was amazing! Two weeks later my bloating went down- down two jean sizes.  Eighteen months later I felt the healthiest I’ve ever been in my entire life.  Before, all my runs and workouts had to be planned and I would constantly worry, “is there a bathroom around?”  It took some time for my body to heal but I had to be patient.  Once I was feeling my best, I trained hard and made the Olympic running team. If Amy2anything, overcoming my health obstacles gave me the strength and inspiration I needed to compete at the Olympic level.

TH: Has your restrictive diet ever made you feel different from your teammates?

Amy: Sometimes.  There’s always a team meal and the teams typically go to Subway for lunch or pasta places for dinner.  Most of the time the coaches forget you can’t eat at these places.  It still bothers me when we go to a coach’s house and everyone is having a celebration cupcake but I can’t. When you’re training you have a serious restrictive diet anyways, but there are plenty of times where everyone is enjoying a type of food together and there’s no alternative for you.

Feeling different is not fun but I always have to remember my health comes first.

TH: Do you have any advice for parents of children with celiac disease who are involved in sports?

Amy: Parents can make a huge difference.  They can pack a treat or a snack so their child always has an alternative.  If you’re traveling for a meet, search out a gluten free baker in the town you’re in and swing by for a special treat.  If the team hosts pizza parties after the game, find a place that provides a gluten free option and ask the coach to order from there.  I coach young athletes now and I believe sometimes it’s as simple as educating other moms and coaches.  I have an entire list of all the allergies my athletes have and I’m probably more in tuned with the seriousness of their conditions than other coaches. I want my athletes to say, “She’s going to understand and think about me when we travel.  She’s actually going to take care of me.”  Really when it comes down to it, I want to be the one to worry about what they can and can’t eat so they focus on what counts- performing to the best of their ability.

To make an appointment with one of our celiac disease experts, please call 617-355-6058 or learn more on our Celiac Disease Program website.

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