Tuesday, August 29, 2017

Sweet Faces of Celiac Disease: Meet Kellen

Kellen is 8 years old and was 
diagnosed with celiac disease 
early this year.

What symptoms was your child having before being diagnosed?

Kellen didn't have your "typical" GI symptoms.  But at age 2.5 he started getting bald spots.  At his 3 yr. appt. we were told he has Alopecia Areata, which is a separate autoimmune disease.  Bc it was "just" hair no one seemed concerned.  I wasn't ok w/ his body attacking itself w/ out knowing why.  He also was diagnosed w/ asthma, eczema, & had chronic sinus/ear problems. Eventually I talked to another alopecia mom who said her kids had success w/ gluten free.  I decided to get a autoimmune workup that included the celiac panel.  Well the test came back positive for Celiac Disease & Hashimotos.  The GI Dr. didn't believe it because he was symptomless. His GI system, labs, & growth curve were all normal as where his energy level & sleep habits.  She was shocked when the biopsy came back positive.

Any other family members diagnosed with celiac disease?

His dad, 1 brother, & sister all tested positive for the gene.  But not the antibodies.

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

We've only been gluten-free for about 6-8 months (we had to go back to gluten after we had stopped for 2months for the biopsy).  But now we are starting to see peach fuzz and bumps on his head which I'm told are his hair follicles coming back!  We are hopeful gluten is root cause of his AI diseases.

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

On top of just to dive right in, find a good informative book, a great website/blog, connect w/ another mom of a celiac kid, have an honest talk w/ your kid (if age appropriate), and make your home gluten-free.  Even w/ other kids or adults at home it's nice to have a safe space. And honestly, it makes our families life easier not having to worry who's eating what.  And I love that my son doesn't need to ask me if something is gluten free or about cross-contamination because everything is gluten-free, including our toaster, pans, jelly, butter, etc...!  Since I do most of the shopping, I choose not to bring it into our house. Oh, and don't forget most toothpastes contain gluten.  

I think our family feels fortunate that gluten-free is currently trendy, even if it downplays our real problem, b/c of it there are so many great gluten-free blogs and gluten-free foods at this point in our life.  Not to mention all the great labeling to make shopping easier!  Oh, and the "find me gluten free" app is amazing to find out about any celiac friendly restaurants in the area!

Kellen, you're handsome young man! I'm happy your path has led you to this diagnosis and I bet you will have a head full of hair one day! And if not, who needs hair anyway?! You're handsome just the way you are! 

Mom, it sounds like you're doing great with adjusting to the gluten-free lifestyle! Great job!

No comments:

Post a Comment