Wednesday, September 14, 2016

Celiac Disease Awareness--Gluten Free, Not a Choice, A Cure

Yesterday was Celiac Disease Awareness Day. In true me fashion lately, I'm a day behind. But I thought I would take the opportunity to share how Celiac Disease impacts our family and spread a little awareness.

My third child, JT, has Celiac disease. 

He was diagnosed when he was 3 1/2, a few months after Wade was born. JT had never been a big eater, he always preferred drinking a bottle over baby food and a sippy cup over lunch. He would get bad stomachaches and get sick to his stomach a lot.  But I had no idea what Celiac was. Being "gluten free" hadn't gone mainstream yet so I wasn't familiar with that either.  After he had hernia surgery, JT started losing weight and was sick all the time. He was slipping off the growth charts and was what doctors call "failing to thrive."  He couldn't digest any food. He looked like a starving child.

Once we got the diagnosis, everything changed. We got rid of the gluten in our house and in most of our life and JT started getting better. He gained weight. He grew. He got happier. He got healthier.

Going gluten free wasn't a choice, it was a cure.

Here are a few of our truths about what Celiac disease was and is for us....

Celiac disease was watching my 3-year-old waste away.
He could not keep any food down. His arms were like toothpicks. His belly was distended and hard as a rock and hollow sounding. He was pail and sickly. But he still smiled because he is JT, such a positive, sweet boy.

Celiac disease is a part of our everyday life. We read labels. We research online. We are very careful. Even a crumb can make JT sick. Our household is gluten free because JT gets sick from cross contamination and we want him to always feel comfortable and included at home.
We shop at all kinds of grocery stores and are reaping the benefits of everyone wanting to go gluten free. There are so many more products available at more affordable prices than there were seven years ago!!!!!

And duh, we still eat cake. Gluten free cake! 

When we travel, we don't think that much about restaurants. We have dinner in our room or on a picnic with the gluten free food we buy/bring. It's actually pretty awesome--we end up saving a lot of money and spending more time relaxing together. This was our spread in our tiny hotel in Atlanta this past summer.
Sadly, we miss stuff and mess up and he gets sick sometimes. One time we thought it was a gluten-free muffin mix and it was not and JT got violently ill. 

Celiac disease does not cause anaphylactic shock. Having to be so careful so JT does not get sick and stays healthy and strong has made my compassion sort of explode for other children and families dealing with any food allergy or autoimmune disease. I cannot imagine worrying about whether or not my child would stop breathing. So when a parent asks me to not bring peanuts to school, I don't and it's not a problem at all.

Celiac disease is not an allergy, it is an autoimmune disease. When JT gets "glutened" he usually throws up a lot and has severe stomach pain. He also gets very dazed and foggy-headed. He becomes very tired and can be in bed for at the very least 24 hours after ingesting the gluten. 

Celiac disease is our normal. It doesn't slow down JT for very long. He is an active, happy, pretty freakin' fantastic kid.

I love him so much. 

Here's some other information from a great web site, Beyond Celiac:

Celiac disease is a serious genetic autoimmune disease.

Celiac disease is the only autoimmune disease with a known trigger--Gluten. Gluten is the protein found in wheat, rye and barley and foods and drinks that contain these grains.

Left undiagnosed and untreated, people with Celiac disease are at-risk for other serious health consequences such as osteoporosis, anemia, thyroid disease and even certain cancers.

Eighty-nine percent of patients experience brain fog after gluten exposure. Some describe it as difficulty concentrating and forgetfulness and grogginess.

Click here to learn more about Celiac disease.



  1. Such a fantastic post. I'm going to share it. So glad JT was diagnosed. I wasn't diagnosed until my 2nd pregnancy because my symptoms were not as glaring, and I basically lived 36 years sort of uncomfortable but not deathly ill.

  2. Poor JT (and you!) for having to go through that, now knowing what was wrong. I'm glad you got it figured out and glad he's such a resilient kid. You're awesome. xo

  3. WOAH! I know this is an old post but I just had to comment! You son as a baby looked just like mine. We never knew what it was. just TODAY I made the connection that it could be Celiac Disease. He is now 10 years old and has terrible skin issues, clubbed fingers, and sometimes digestive problems. He no longer has a large tummy, but as a baby we always got comments on his non existent bum, his skin wrinkles, and his big tummy. Our doctors never said anything and just gave us creams to help his eczema. He is still super skinny and several people have commented that he looked ill. Your sons hair looks just like my 10 year old. He is a little worried about testing but would love to change his life around. We are starting a food journal tomorrow and hoping things go well for us. It's good to know there are other kids out there.

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