Wednesday, June 14, 2017

Sweet Faces of Celiac Disease: Meet Nolan

Nolan is 6 years old and was diagnosed at 5 1/2 years old.

What symptoms was your child having before being diagnosed?

NONE! That we knew of at the time. He's ALWAYS struggled with weight gain and growing...he was born at 5lb 14oz/19 inches. Some docs said "he's just going to be a small guy (despite a 6.5ft dad & 5ft 8inch mom)...some docs threatened me with feeding tubes and the dreaded FTT but refused any other work up. 

At our 5yr check up Nolan had not grown in over 2 yrs., so the doctor ordered a slew of blood work. I'm a pediatric nurse and hesitated because I just "knew" celiac meant DIARRHEA...but my Nolan had always struggled with constipation...he couldn't be celiac! 

Now through MUCH research we know he had symptoms for EVER...and now also recognize them in his 18mo little brother. 

NOLAN struggled and still struggles with growing, constipation, headaches, behavior/emotional issues, bed wetting, constant hunger and boarder line hypoglycemia, joint pains.

Any other family members diagnosed with celiac disease?

Not yet! Little brother (who is 99% GF thanks to Nolan and is thriving!!) Has tested negative on the IGA (but we also found he has an IGA deficiency). Cousin who is 6 mo is very sensitive to gluten but has not had a positive blood test yet.

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

Oh wow it's only been 8 mos and it makes me so emotional!! FINALLY Nolan is growing and catching up to his peers. His self confidence is up. He was so sick of kids not picking him to play because they thought he was "a baby". He speaks up and out for himself so much more now that he sees how important being GF is for his health. Our frustrations around constipation have all but disappeared. He's not afraid to go to the bathroom at school anymore. Meal times were frustrating and painful...not anymore. He gladly is involved in most food prep now and is not afraid to eat. Our numbers are still very high at 6 mos out but our lives have improved sooooo much!! I'm sooo excited for what's yet to come!

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

Take it day by day...and if that's to overwhelming (it totally can be...I was there) take it meal by meal. Join blogs and support pages like Jack’s to find some normalcy in all the chaos.

I'm so happy to hear that Nolan has improved so much since being diagnosed and living gluten-free!! Keep it up Nolan, you're doing AWESOME!!

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