Monday, May 1, 2017

Celiac Disease Awareness Month: Red Flags, Symptoms & Testing

(Disclosure: I am not a medical professional. I am a mom who is providing information that I wish I had before my Jack was diagnosed with celiac disease.)

My son Jack was diagnosed with celiac disease at the young age of 2 years old. He is now, a happy, healthy almost 11 year old boy. 

When Jack was diagnosed in 2009, we had never heard of celiac disease, nor had any of our family and friends. The day before getting the call from the doctor that Jack had a celiac disease, I was talking with my friend on the phone and she did mention celiac, she said, “My friend’s mom was diagnosed with celiac, where she can’t eat gluten, hopefully, it’s not that.”

My son Jack was one of the lucky ones. He was diagnosed immediately. At his 2 yr. well check appointment I mentioned some things that were going on with Jack - diarrhea, irritability, laying around a lot to his pediatrician. She said, “I think we’ll go ahead run some blood work just to rule anything out.” Little did I know, a celiac panel was to be done.

When I say, Jack was one of the lucky ones, that’s because many children are undiagnosed many times over. They are sent home, told to try this and that, when they are actually living with an undiagnosed autoimmune disease.

Due to the multiple symptoms of this disease, many parents are driving back and forth to the pediatrician’s office, complaining about the same symptoms, but nothing is being done.  Jack had the “classical” symptoms of celiac disease. Unfortunately, many children do not. As I read stories from my Sweet Faces of Celiac Disease campaign (link below), I noticed that many children had constipation

Constipation is a classical symptom as well, but many parents and children are sent home and told to take Miralax (laxative) and it should pass. Of course constipation can be common in small children, as many are picky eaters and not getting enough fiber in their diet, or enough fluids, but as a pediatrician, why not rule out celiac disease?

My hope is to raise awareness among parents so they can be aware of the multiple symptoms (Classic, Silent and Non-Classic) of this disease, and ask the pediatrician to order a celiac panel. A celiac panel is a specific group of blood tests that detect celiac disease.

I do feel that the majority of pediatricians are paying more attention to celiac disease, especially with the gluten-free boom in the past five years, but unfortunately, there are still many children that are going undiagnosed for too long.

When talking with your pediatrician, make sure he or she is knowledgable about celiac disease and it's symptoms - here are some PEDIATRICIAN RED FLAGS:

- "He's not having diarrhea, so I don't suspect celiac."
- "If he's just having constipation, it's not celiac."
- "He must still be getting over the stomach bug."(5 weeks later?)
- "Just keep giving him Miralax."
- "He's too young to have celiac disease."
- "We don't test for celiac disease before 2 years old."
    (Children are being diagnosed as young as 1 yr. old)

YOU are the one who determines whether your child should be tested, NOT the pediatrician. What would I say: "I would like to rule out celiac disease - I believe it's just a simple blood test, can we go ahead and have that ordered?"


Be your child's health advocate! If you know someone who has a child with severe constipation, pass this along - it NEVER HURTS to dig a little deeper and rule out potential culprits.

These Sweet Faces of Celiac Disease profiles share symptoms as well - have a read or share with friends and family to help raise awareness of celiac disease.


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  2. Thanks for this info. Both of my kids belly's look exactly like your "before" pic. They are both extremely short (way below the growth chart), although they are growing at a good rate (their growth was slow up until age 3 and they haven't caught up). They're being followed by an endocrinologist and she basically has no idea why they're so short. My daughter has also been very slow to gain weight over the past few years (only about 2 pounds a year from ages 3 to 6).

    They were both tested for celiac about 3 years ago. I wonder if I should insist on having them re-tested.