Jack's Story

When I think back to right before Jack was diagnosed, it's hard for me to look at pictures, like the one below. We had never heard of celiac disease - why would we think gluten was hurting him?? It makes me sad thinking back to that time, because my little guy was sick and I just didn't know it. 

Jack's 2nd birthday party - he's poor belly is distended
due to inflammation...I had no clue.

Jack had his 2 year well check the week following his birthday. I mentioned to his pediatrician that something didn't seem right. Jack was having diarrhea, seemed irritable and was laying around a lot. At the time, he also had a distended belly, but I didn't know that, I thought that was just the way Jack was made. The pediatrician suggested to run some blood tests just to make sure everything was fine. Little did we know, one of those tests would be for celiac disease. 

When I think back to right before Jack was diagnosed, it's hard for me to look at pictures, like the one below.  We had never heard of celiac disease - why would we think gluten was hurting him?? 

Jack's pediatrician called me the following week to tell me that Jack had celiac disease and he would have to live a gluten-free lifestyle for the rest of his life. 
In this picture, Jack's bum is flat, it has no fat. This is called
"muscle wasting", which is also a symptom of celiac disease.

The search began! I was on the Internet researching celiac disease and the gluten-free diet. For 2 weeks, I was overloading myself with information. What's gluten-free? How did he get this? Hereditary? Who carries the genes? After two weeks, I finally cried. It was overwhelming! I was scared, shocked and didn't really know what was next.

BUT, it got better and the best part, Jack was IMPROVING IMMENSELY! Within 2 weeks of being gluten-free, Jack gained weight, had solid stools and started running around like a 2 year old. I was SO HAPPY to see Jack feeling better - it was AMAZING!


Jack's diagnosis inspired me to start this blog, in hopes to raise awareness of celiac disease and help others on their journey of living with celiac disease or raising a child with celiac disease.  If someone had told me about this autoimmune disease, maybe I could have caught Jack's symptoms earlier. Jack had the "classic" symptoms of celiac disease, BUT there are many hidden symptoms that are so often misdiagnosed. Luckily for Jack, he was diagnosed right away. I'm so thankful for that every day.












Getting tested for celiac disease is much easier than you may think. In many cases, you have to be your own advocate as well as your child's. Talk with your doctor if you see symptoms in your child. Beware of the red flags when speaking to your child's pediatrician. Many children continue to be misdiagnosed because they are either not tested accurately, the doctors miss the signs or parents are just unaware of what to look for.

In a world where "gluten-free" seems to be a "healthy" way of living, those diagnosed with celiac disease have NO CHOICE but to avoid gluten to keep their autoimmune disease in check.

My hope is to educate others about celiac disease and the gluten-free lifestyle. By educating others, gluten-free living will be seen as a medical necessity and not as a new diet trend.

4 comments:

  1. My daughters belly is distended and the Dr's always told us it was just gas. Seeing your boy like this just confirms my belief that my little girl has a gluten allergy, and something can be done about it. I am tired of waiting on a doctors opinion when I can see she is in pain sometimes.......There is no reason for her to look malnourished with the distention when she has what is considered a normal diet. I think it is very obvious what I need to do for her......

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    1. I'm sorry to hear your daughter's belly is bothering her. I would suggest telling your doctor's you WANT her tested for celiac instead of ASKING them to test her. Good luck and I hope your daughter feels better very soon!

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  2. Hi Jacks Momma!

    My son was just diagnosed last week at age 15 months. We knew something was off when right after his 1st birthday, he caught a stomach virus and just didn't seem to bounce back. He was continuing to vomit nearly daily, became incredibly constipated/bloated and his mood took a huge turn. He also quit trying to walk, (he was just starting to when the virus hit) and started to lose weight. It was a scary time, in which we saw our regular dr. a few time then saw a Ped. GI at CHOP where he was tested for celiac right away. Our family dr. never suspected celiac. His blood test was off the charts positive and he had his biopsy at the beginning of the month.

    My little guy has been CF for 10 days now (we started his GF diet the day of his biopsy) and we are seeing wonderful changes in his mood and energy levels. He went from 0 to 60 in his toddlerhood this past weekend. It has been a relief to know how to care for him now, and what was making him ill. I am thrilled at seeing my sweet little boy spring back to life.

    I have so many questions for you!!

    How soon did you see Jack’s belly go down? My little guy has a distended belly (which he has had for a very long time). How can you tell if he has accidentally been “glutened” or just being a toddler? (in my case)

    I hope to hear back from you soon. I am so new to all of this and just trying to make some new friends in the GF community.

    Thank you for your time!!
    Grant’s Mommy - Lauren

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    1. Hi Lauren! Could you please email me at raisingjack@gmail.com and I would happy to answer any questions you may have. It's different for every child - we saw improvements within just the 1st two weeks of changing Jack's diet. It was amazing! Please email me and we'll chat more.

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