Friday, September 22, 2017

Sweet Faces of Celiac Disease: Meet Bella, Madilyn, Lily & Jonathan

Triplets: Bella, Madilyn and Lily are 8 years old and were diagnosed last year with celiac disease. Their brother Jonathan, is 10 years old and was also diagnosed last year. 

What symptoms was your child having before being diagnosed?

Bella: GI symptoms, painful stomach, nausea, vomiting, constipation/diarrhea, ADD symptoms/diagnosis, learning delay

Lily: Hair loss (patches), minor stomach issues, small size. Very picky in regards to food.

Madilyn: GI issues, constipation, upset belly, small size, easily distractible, starting to have hair loss in patches (like Lily).

Jonathan: "Didn't like pizza/pasta/bread/cereal", ADHD symptoms (& diagnosis), forgetful, Transient motor tics

Bella, had stomach issues since she was about 2 years old. She would vomit after eating out, constipation, and then it continued to get worse.  I talked to our pediatrician about it, she thought she had reflux, so after trying meds for that for several months (with no improvements) I finally pressured the doctor to do some tests.  She agreed to do the celiac panel, but felt that it was more likely that 
Maddy (the smallest of the triplets) had celiac because she has always been so small, and pretty much has to run to the bathroom every time she ate food.  But, because Bella's stomach issues were more debilitating (it's not normal for a 7 year old to vomit every day) we started with her.  

The third triplet (Lily) had spots of hair loss--- doctor had  run autoimmune blood tests for that (except celiac), and they all came back normal.  After reading that celiac can cause hair loss, I asked pediatrician if we should test Lily, but doctor said celiac doesn't cause hair loss.  We decided to just start with the celiac panel for Bella.  Her blood tests came back positive for celiac.  We made appt with pediatric GI, and then confirmed with endoscopy.  Her damage was grade 3 B/C.  In the meantime, after Bella's positive blood results, the other 3 kids got tested, as well as my husband and myself.  

My husband was negative, and the rest of us were all positive.  (I have had GI symptoms for years, but just figured it was just the way I was.  I also have awful headaches... turns out due to gluten).  Anyway, the 3 other kids got an endoscopy as well, and all came back with Grade 3 B/C damage as well.  

As of August 2016, we have been gluten free. 

Any other family members diagnosed with celiac disease?


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

They feel so much better! They are now growing!

Bella: no more belly issues!  She feels so much better!  ADD symptoms are better. Making progress at school.

Lily: Hair grew back, eats more of a variety of foods.

Madilyn: less belly issues, a little less distracted.

Jonathan: ADHD symptoms are better, now eats pizza/pasta/cereal.  Motor tics have gone away

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

Get educated, and empower your child(ren) to be aware of where gluten is, what foods they can/cannot have, and ways to prevent cross-contamination.

You all look so healthy!! It's a blessing to have each other's support and to share gluten-free cookies with. I hope you're all doing well!!

And Mom, what a blessing in disguise to say the least that having your children tested for celiac disease, led to your diagnosis. I hope you are feeling much better too!

1 comment:

  1. This is the spirit that every patient and any other person in the world needs to live a happy life. Bravo to the effort of Clare that now she is living happily and smiling.