Monday, September 4, 2017

Sweet Faces of Celiac Disease: Meet Izabella and Ashton

Izabella is 10 years old and was diagnosed with celiac disease when she was 
1 year old. 

Her brother, Ashton, was diagnosed the same year, when he was 5 years old. 

Ashton is now 14 years old.

What symptoms was your child having before being diagnosed?

Izabella: Seizures, water BM, colic, breathing problems, failure to thrive, Eczema, vomiting

Ashton: His symptoms were watery BM. I remember one time a GI DR. wanted to do a food challenge in the office and gave him purple grape juice. Within five minutes that juice was on its way out and it still looked like purple grape juice. 

He had eczema, asthma, and random non descriptive rashes all the time. Ashton was tested for several types of cancer, cystic fibrosis, diabetes, celiac and a number of other tests that spanned three years with no diagnosis in sight. 

A nutritionist recommend boxed macaroni and cheese several times a day with full fat cows milk to get the fortified nutrition. As you can guess he continued to deteriorate and was intermittently hospitalized. 

My diagnosis then my husband’s made my sons GI DR. evaluate further than the one celiac blood test he had done years before (that was negative) low and behold endoscopy and colonoscopy showed celiac. 

Ashton was also diagnosed at 2 years old with a dairy intolerance and a anaphylaxis bee allergy. 

Any other family members diagnosed with celiac disease?

Mother 6 months prior at 28 years old
Father 3 months prior at 28 years old

It was such a fluke. But my diagnosis and my husband’s started a spiral of testing for the kids.

How has your child’s life changed since being diagnosed?

She went from a sick baby with multiple hospitalizations to a healthy thriving child. Her recovery was so quick when we figured out what was wrong. Her brother had similar symptoms only he was older so they were more devastating. Uncontrollable diarrhea in a school classroom or on the school bus is traumatic. Diagnosis made him feel better even though the transition made him feel different at parties he chose to watch what he was eating very early. He became the biggest advocate for his and his sister'ss health.

Last year he wanted to do school lunch and regardless of the schools best efforts I watched him get sick over the course of the year. With daily stomach issues and vomiting several times a week. Over the past year he has developed an egg allergy and soy allergy and has needed his EPI-Pen several times. He is in the 15th% for height and weight and struggles to gain weight. The plus side to the past year is that he has made the decision to eat his own food and not eat out. He knows better what his body needs and he is getting better at making the hard decisions to be the healthiest he can be. 

Ashton is cherished by his parents, a competitive swimmer, loved by his teachers, has many friends, and will be in high school soon. 

From Ashton: It is never easy when your food restrictions or allergies make you stand out. Just remember everyone is different; wonderfully so. My mom was amazing when we were little and always fought for us. Through her perseverance I was a healthy kid. Through her love I was allowed to test my limits and discover for myself what was needed for my body. I cherish all my mom does in preparing food for me. I also thank websites like yours that provide needed help through this process. Each phase in my life has provided new benefits and unique struggles. I excitedly look forward to what high school and college have in store for me. 5 months 3 weeks EPI-Pen free. :)

What advice would you offer a parent who’s child was just diagnosed with celiac disease?

Don't stop being a kid! You will find friends that can be trusted to keep you safe. Be strong enough to say no when someone is trying to give you food when you suspect gluten. Parties, outings, sleep overs, and activities are well within your reach. Parents be the greatest advocate for your child learn all you can and don't be afraid to share the ways to keep your kiddo healthy.

WHOA! Crazy how things came to be and to see the whole family diagnosed with celiac disease! BUT, what a blessing to be on this journey TOGETHER.

Izabella, I'm so happy you are doing well and feeling healthy! And Ashton, keep staying strong and taking good care of yourself!. You're going through the some of toughest years of your adolescent life, but you got this!! Don't waver on your gluten-free diet, as you know the cross contamination just isn't worth it.  I'm SO HAPPY you are EPI-Pen free too! Best wishes with school.

And Mom, your advice is perfect! Keep taking good care of your family. ;)


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