05 Sep Celiac Kids
“You worry too much”, “You are a hypochondriac”
……these are statements I’ve been told numerous times throughout my time as a parent. “You Saved your kids lives“…I had never heard that until this morning.
My families journey with Celiac Disease started in July of 2015 when I was diagnosed after several years of stomach and health issues. I thank God every day for my diagnosis because those few years prior to diagnosis were miserable. I share our story in hopes that in may help at least one person in their own personal health struggle.
Flash forward to this May when my 6 year old had her well check at her pediatrician’s office and we were told that she only gained .4 oz in 10 months. This was alarming to both her doctor and us. They asked if she had any history of belly aches to which my answer was “yes”, every day. I guess I was in denial that her lethargic personality, frequent naps and daily stomach aches were just part of being a child. Boy was I wrong.
The first suggestion was to feed her pediasure and see if she gained weight. Being the health and wellness advocate that I am, I wasn’t settling for that. I knew that for every health symptom, there is a reason and I wanted to find the source before I settled for a treatment. I knew that people with a first-degree relative with celiac disease (parent, child, sibling) have a 1 in 10 risk of developing celiac disease so I began to advocate that she be tested to see if she had it.
Now, because I tend to worry, I knew that if one girl was tested, I would always worry about other daughter so I requested that they both be tested even though my oldest had no symptoms. (If you have celiac disease without noticeable symptoms, your condition is called “silent celiac disease” or sometimes “asymptomatic celiac disease.” I thought for sure when the doctor called with the results that our youngest would be positive and our oldest would be negative. I mean, she had no symptoms. Again, I was wrong. According to their results, they had extremely high levels of TgG, which is the marker for celiac disease. Regardless of what you may have heard or what social media tells you, the only treatment for celiac disease is a gluten free diet for life. Having to tell my kids that they would never be able to have some of their favorite foods again was very difficult but in the same conversation we reminded them that it’s a manageable disease and some kids aren’t as lucky. While they may morn the loss of Chick Fil A nuggets and Dunkin Donuts, they are healthy kids who can play with their friends, be a part of their sports teams and live a happy life. (I have a brand new respect for parents with children who have a peanut allergy)
Back to this morning’s doctor’s appointment with the Pediatric Gastroenterologist in Morgantown, WV. He walked into the room and before introducing himself, said “You saved your kids lives”. He was shocked that I had advocated to have them tested with little symptoms. Mommy Gut guys…it’s a true thing. He educated my girls on the severity of their risks if they choose not to follow the diet. He told us that from the date of the diagnosis, our little one had gained 2 lbs (YAY) and that they were doing great. He was impressed on our knowledge of a gluten free lifestyle and told us that he felt confident in our ability to care for the girls with no follow up with their group!! (that’s huge with kids who hate the doctors)
Be an Advocate for your Child
My advice to those parents who may be having the same “gut feeling” as me or for those parents who have Celiac disease themselves…get them tested. It’s a simple blood test that could save their lives. The following are complications that come from undiagnosed celiac disease:
- Malnutrition. Many people with celiac disease will have trouble maintaining a healthy weight and may complain of fatigue and weakness. …
- Bone loss. …
- Lactose intolerance. …
- Irritability and depression. …
- Lymphoma and bowel cancer. …
- Low birth-weight babies. …
- Dental defects.
What do my kids lives look like with Celiac Disease?
It looks just like your kids, without a few conveniences. It involves a lot of planning ahead and prepping to ensure that they always have safe food around them. It involves their “village” being educated. Side note…I cried tears of joy when my girls went to a play date after being diagnosed and our friends had purchased them gluten free snacks! It was at that moment that I knew all would be ok! If you are part of our village, I thank you from the bottom of my heart for loving our girls and caring for them. While they miss some of their old favorites, they are finding their new favorites!
Some of my girls favorite “gluten free treats” so far are
- Chick Fil A waffle fries
- Chipolte Burrito Bowls
- Brandon’s Best Allergy Free Donuts
- Papa Tom’s Pancake mix
- Udi’s gluten free pizza
We are all learning as we go but they are rock stars and I am incredibly proud of how they are taking this life style change! They are teaching me that food is just that…food. Their happiness hasn’t changed because of what they can’t put into their mouths! Kids can be the best teachers sometimes huh?
Yours in good health,