National Celiac Awareness Day

National Celiac Awareness Day

Mary

I remember it like yesterday.  My daughter was in kindergarten, my twin sons were only two years old, and my mom was in chemo treatment battling stage 4 breast cancer.  Balancing my teaching job, with a sick mom and three small children was quite a challenging time.  Just when I thought things were a little taxing, Judy started having stomach aches.  She would cry and not want to get out of bed.  Over time her stomach aches and pains would come and go and it was inconsistent.  The doctor said to keep an eye on it and maybe she had a tummy bug or just some kindergarten anxiety.  From Halloween to Thanksgiving she was on a down-ward spiral.  Not only did she have constant stomach aches, she was sad, she had extreme mood swings, her legs ached and she did not want to do gymnastics or dance class anymore.  She was skinny.  I mean so thin her ribs stuck out.  She was not short, but she did not have an ounce of fat on her body.  She was not my “happy Judy” anymore.  Her sparkly personality wasn’t always there anymore.  Her teacher would call me and say how her personality is changing.  She had a terrible rash on her head and back and she would scratch and scratch; I was told she had eczema. She started having extreme thirst so I brought her back to the doctor in December. I went to “Dr. Google” and researched these symptoms.  I was convinced she had diabetes but also learned that the symptoms for Celiac disease were similar being an autoimmune disorder.  Judy has a cousin with both diseases so I wanted her tested for both.  I knew in my heart there was something seriously wrong with my daughter, something causing the anxiety, depression, mood issues, leg pains, stomach aches, weight loss, and rashes.

The blood results came in and she was diagnosed with Celiac disease.  My heart sank.  My baby has an autoimmune disorder?  There is no cure?  It can trigger other autoimmune disorders?  WHAT…GLUTEN-FREE FOREVER?? ARE YOU KIDDING ME??  She was referred to a pediatric gastroenterologist right away and he scheduled an endoscopy within a week.  I couldn’t believe my child had to have this procedure, my little peanut, but the endoscopy would confirm the Celiac diagnosis.  When we went over the results with her amazing gastroenterologist he promised me that ALL of those symptoms would go away with a gluten free diet.  Even her rash was not eczema; it was Dermatitis Herpetiformis, a skin condition caused by Celiac disease.  He looked at me and said Celiac disease is not allowing your daughter to receive any nutrition, not only keeping her super-skinny but there is no way to regulate emotions without nutrition.  He promised me with a gluten free diet my little girl would come back to us.

Within two months of gluten-free diet Judy’s effervescent and sparkly personality was back.  She began gaining weight.  Her stomach pains became a thing of the past.  Her rash and leg cramps were gone.  It was amazing.  🙂

Don’t get me wrong, it is never smooth-sailing when you have Celiac disease.  Judy will always have blood work, she will always be monitored by a gastroenterologist, she tends to get sicker quicker and it takes longer to get better than her peers because her immune system is compromised, and she will never be able to walk into any restaurant or bakery and order anything she wants.  She will always have to monitor her diet.  She will always have to be aware of cross-contamination.  It will always be a daily challenge.

Celiac disease does not define my daughter.  She is a ten-year-old child that loves gymnastics and golf.  She loves to be with her family and friends.  She loves fashion.  She glitters inside and out.  I am truly blessed to call Judy my daughter.

Today, on National Celiac Awareness Day, I am grateful to modern technology, wonderful doctors and nurses, and researchers who devote their time and energy to find a cure for this terrible disease.  I pray every day they will be able to find a cure.  Thank you to the companies for the gluten-free products that keep coming onto the market and to our stores.  I am eternally grateful.

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