Saturday, July 1, 2017

Sweet Faces of Celiac Disease: Meet Hayden

Hayden is 10 years old and was diagnosed with celiac disease at 8 years old. 

What symptoms was your child having before being diagnosed?

Hayden was lethargic, throwing up could not even go on a car ride without vomiting. White floating stools. Lots of blood. An abdominal cramps so bad that the hospital thought his appendix was needing to come out. Vitamin D levels non existent. Elevated liver enzymes and rising platelet counts. Severe headaches and behavior issues. Never had raised TT IGA levels before diagnosis so it was not until biopsy we had answers.

Any other family members diagnosed with celiac disease?

None

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

Since diagnosis Hayden has gone through depression because of the change in diet and just wanting to fit in. But his overall health is better.  His behavior associated with autism has even improved somewhat. He's no longer throwing up constantly. Although he continues to have very bad headaches. He was staged at 3b, although he is continuing to get better we are hoping his intestines will heal and start absorbing nutrients better. He continues to see his specialist.

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

You are your child's BEST advocate! It's tough at first and overwhelming trying to cook a new way with new flours and foods BUT there is light when you see your child improving it's ALL worth it. Also get involved in some groups, I prefer FB groups but any will help.  I even started a personal FB group to document my sons progress because I have found that it's been a good way to share what the disease really is. Before my son's diagnosis I never heard of celiacs so remember that when people don't understand or make rude comments like, oh it's the Gluten free DIET fad. We were once there and use it as a education moment for others.

Hayden, I'm so happy you are diagnosed and feeling so much better! Keep it up kiddo and I hope you have a great summer!

And yes Mom, it's ALLLLL WORTH IT when we see our children striving and changing for the better. The more we advocate for our children, the more we teach others that celiac disease is not a gluten-free fad. 


No comments:

Post a Comment