Sweet Faces of Celiac Disease: Emily & Allison

Emily is 8 years old and was diagnosed at 7 years old. 

Allison (left) and Emily (right)

Emily's sister, Allison, is 6 years old and was diagnosed at 5 years old.

What symptoms were you or your child having before being diagnosed?

Emily would have severe stomachaches off and on for years. We thought it was gas because it would eventually pass.  She continuously got sick with colds, flus, etc. Her last real sickness resulted in her not eating for almost 2 weeks so we brought her in and they tested her.  We were surprised! They told us to get everyone else tested and we were shocked to find out our youngest daughter had it as well. 

Allison had a rash on her bottom for years. She saw specialist after specialist, at one point, 10 doctors were in the room looking at her little butt.  One could figure it out. After being diagnosed with celiac and going gluten-free, it disappeared. Her symptom was the skin manifestation of celiac, dermatitis herpetiformis.  Looking back, however, there would be times of severely high fevers (106) with extreme abdominal pain.

Any other family members diagnosed with celiac disease?

None. However, I had genetic testing done and I carry the gene.

How has your life or your child's life changed since being diagnosed?

For Emily she is much happier. She has grown in height and is much happier. 

For Allison, no more rash, unless she comes in contact with gluten. She also has grown in height.

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

I would tell them they are going to be extremely overwhelmed at first. But it really does get better. Watching your child feel better is so awesome!  Are so many resources and so many others out there in their shoes and everyone will have their back.

Thank you Mom for sharing their story! I can't stress how important it is to have siblings tested even if they aren't having the same symptoms as their sibling.  I'm happy they have each other for support and share something that brings their sister bond even closer.