Friday, July 21, 2017

Sweet Faces of Celiac Disease: Meet Anastasia and Titus

Anastasia is 8 years old and Titus is 6 years old. Anastasia was diagnosed with celiac disease at 6 years old and Titus at 3 years old.

What symptoms was your child having before being diagnosed?

Titus was having severe abdominal pain, alternating diarrhea & constipation, purple under his eyes, his skin was becoming paler and paler, he was developing very slowly and missing milestones, and he stopped growing (both in weight and height) at 2. By three he was sleeping more than he was awake and barely eating.  He had a negative blood test at 2 and then a positive at 3. His villi were so damaged that they could see visually that he had celiac disease, the biopsy confirmed it. 

Anastasia was having mild abdominal pain several times a week and due to her brother's diagnosis, she was tested. Her blood work was negative but her biopsy was positive.

Any other family members diagnosed with celiac disease?

Their third cousin was diagnosed at 2.5years. 

My second cousin (their third cousin's dad) was diagnosed in his mid 30s. 

I have several other family members not formally diagnosed but have been told to go gluten free.

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

Titus was wearing 18month clothing at 3.5years old. At 6.5, he is now wearing size 7. He has grown so much and has caught up developmentally. More than that, he is smiling! Living in constant pain had become such a huge part of his life that he wasn't smiling anymore. 

Anastasia is no longer having frequent abdominal pain and is a huge advocate for celiac disease. 

Both of my children are constantly educating their peers and their teachers about their disease and how to keep them safe.

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

Jump in full force. It's easier to create a gluten free house than to try to create spaces in the home. We started by having gluten free spaces for Titus and non-GF spaces for Anastasia, but managing that was a nightmare. Since Anastasia was diagnosed, we got rid of the zones. No gluten enters our house. 

Get on good terms with the school nurse, teachers, and administration. Having a good line of communication and being able to educate those that teach your child is the best way to keep your child safe at school. I write letters, send in picture books to read to the class, and offer to bring in GF treats. 

Also, buy a lot of lunch boxes and thermal totes to carry food. Its amazing how many places you'll have to bring food to. And... we go a little overboard with avoiding contamination now with the hopes that when they are teenagers and become more lax on their own that they are still able to be healthy.

How sweet are you two!! I'm so happy to see you both feeling so much better! I hope you both are having a great summer! Keep smiling and encouraging one another.

An yes Mom, as I have always said, COMMUNICATION IS KEY. Especially at school - from teachers to the principal, I make sure everyone is on the same page.


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