Thursday, June 29, 2017

Sweet Faces of Celiac Disease: Meet Lizzie

Lizzie is 15 years old and was diagnosed with celiac disease 
at 12 years old.

What symptoms was your child having before being diagnosed?

Mouth sores and severe headaches and stomach aches.

Any other family members diagnosed with celiac disease?


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

We spent 8 months trying to figure out what was wrong with Liz. She was so sick and had begun starving herself, we went from one GI specialist to another being told it was IBS and given pills for it. Finally she was diagnosed and it has been a crazy journey from the overwhelming issue of figuring out what celiac is and how not to poison my child to anxiety attacks that she developed in fear of eating and being a normal kid who has to pack food to every party and to spend the night at a friends requires so much planning.  Liz is so disciplined in her eating gluten free, she was so sick and now feels so much better. She developed large nodules on her thyroid and in July 2016 she had a complete removal of the thyroid. This journey has taught Lizzie that no matter what you face you can overcome, celiac, panic attacks and thyroid disease were just small bumps in her journey that have made her stronger. Celiac is just a normal part of our life now.

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

Don't give will make mistakes trying to figure it all out. Find a support group or another person that are facing the same issues that can help you. Before you know it you will be a pro and others will come to you for help.  Celiac isn't the end. After some healing life returns to normal for your child, a new normal but a normal. Always be an advocate for your child. Your child may hear a lot of "I am sure now you can have gluten or that won't hurt you it is just a little bit".

Lizzie!! Oh my, I'm so happy you're feeling so much better! You went through quite a bit. Being a teenager can be hard enough, but adding celiac disease and gluten-free living to the mix can be challenging. BUT, it sounds like you are taking your gluten-free life in stride and putting your health first, which is MOST IMPORTANT. Best to you and have a wonderful summer!

And Mom, I love that you said, "you will mistakes" - because we will as parents and as kiddos.  BUT, we will learn from them. AND, like you said, it's a "new" normal. And advocacy is the best thing we can do for our children and others.

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