A Parent’s Guide To Toddler Celiac Disease Testing

Celiac Disease is relatively easy to diagnose when the right tests are performed. The harder part of the process is getting from first symptom to the actual diagnostic testing.

by | Jan 8, 2020

Introduction

Celiac Disease is relatively easy to diagnose when the right tests are performed. The harder part of the process is getting from first symptom to the actual diagnostic testing. If you’re curious about the journey we had to get to diagnosis, then check out this post. In this post, it may seem as though I’m staying rather surface level with the specifics of the tests performed. That’s for three reasons: 1) I’m not a doctor and I can’t explain it all, 2) procedures are a constant evolution and what may be true today may not be true tomorrow, and 3) the actual testing performed may vary by age.

The most important thing is that when you think your child is experience symptoms of Celiac Disease, such as those outlined in this post, that you move your doctor to perform the right tests to confirm the diagnosis. Get to a pediatric gastroenterologist. Do NOT go gluten-free right away unless you’re directed by your pediatrician to do so. The process for confirming Celiac Disease requires a gluten diet at this point in time.

The Celiac Panel

The first tests that your pediatric G.I. will likely perform if they suspect Celiac Disease are done via bloodwork. Your child isn’t going to love this experience, but it’s absolutely necessary. The panel is actually a series of small tests that will give both positive/negative results as well as numerical values that can be best interpreted by your physician. Again, I’m not going into the specifics here for the reasons mentioned above.

The most frustrating part is that this testing can take some time to get back. It took up to two to three weeks for our G.I. to receive the full results. After that, you’ll likely be fighting your own G.I. office to receive the results either by phone or follow-up visit.

If the Celiac Panel comes back with a positive indication for Celiac Disease then you’re still not technically confirmed with a diagnosis unless you go forward with an upper gastrointestinal endoscopy and biopsy of the intestines.

Upper G.I. Endoscopy

After confirming a positive indication for Celiac Disease through bloodwork, your pediatric gastroenterologist will likely want to go forward with an upper gastrointestinal endoscopy and biopsy of the intestines. They will be looking for damage to the villa lining the intestinal wall. Your child must continue to intake gluten until the endoscopy is completed.

Your gastroenterologist will likely be performing the procedure at their affiliated hospital. Most hospitals will schedule their youngest patients at the start of the day, which means your toddler will likely go in first thing — and that’s a good thing since they will not be able to eat the morning of.

For us, the wait for the endoscope (which took about a month to schedule) helped us mentally prepare and to be honest, the actual event was rather painless and the risks of complication are rather low. It started with an IV for the anesthesiologist to administer a light sleep. Once delivered, you will be taken to a waiting room while they perform the short procedure. The procedure involves inserting a scope orally that is fed through the esophagus and into the upper intestines. They take a few quick pictures and a small biopsy to be sent to a lab for confirmation.

Once the procedure is complete, you’ll be brought right back to your baby until they wake up. As with any hospital visit, your nurses are your heroes and will likely be all over bringing apple juice and popsicles for your little one. This is the point where our G.I. was able to give us a positive diagnosis based on her findings. After the anesthesiologist gives the all clear, you’ll be discharged and free to go.

Recovery Time

Recovery time is minimal to non-existent and may involve a sore throat for a day or two. With a positive diagnosis, you can now begin the process of preparing for gluten free living.

Do you have questions about our experience with the diagnostic process? Feel free to comment below!

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  1. The Celiac test is positive, what now? - Together & Fearless - […] and friends who had been walking through this journey with us. Fast forward through several more doctors visits and…

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Find a local resource through ROCK (Raising our Celiac Kids) and the National Celiac Association.

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