Testing Kids for Celiac Disease: Who, When, How

Christopher J. Chiu, MD; Jessica Hane, MD, MPH, MBA


August 29, 2023

This transcript has been edited for clarity.

Jessi ca Hane, MD, MPH, MBA: Welcome back to The Cribsiders. This is a Medscape video recap of one of our recent podcast episodes. Chris, what topic are we reviewing today?

Christopher J. Chiu, MD: We had a recent episode where we chatted with Dr Dale Lee from Seattle Children's Hospital about the diagnosis and management of celiac disease, called Celiac Disease – The Great Mimicker.

Hane: What were some of your favorite pearls and takeaways from the episode?

Chiu: Celiac disease is an immune-mediated reaction to gluten, a protein found in wheat, barley, and rye. The symptoms are mostly due to inflammation, especially in the gut, which leads to things like malabsorption and osmotic effects that cause diarrhea and bloating.

Hane: You mentioned some of the symptoms, but when should we really consider testing a child for celiac disease, and how do we test for it?

Chiu: One of the big takeaways from talking with Dr Lee was that he really wants us to know that we should have a very low threshold to test. He equates celiac disease in the GI world to lupus in the rheumatology world because it's one of the great mimickers. You can see all sorts of symptoms — abdominal pain, distention, constipation — although he was clear to say that there's no hematochezia in celiac disease.

There are, however, many non-GI symptoms, including difficulty focusing, migraines, rashes, joint pain, and faltering growth. So, if you suspect that a child has celiac disease, he recommends the gold-standard test, tTg-IgA [tissue transglutaminase immunoglobulin A], as well as a total IgA level. In terms of other testing, there are other scenarios, such as seronegative cases and patients with low IgG levels, but those are outside the realm of this talk. I recommend that our viewers check out the full podcast episode for some of those specifics.

Hane: You mentioned labs, but what about endoscopy? Is there a role for endoscopy in diagnosing celiac disease in kids?

Chiu: Yes. Endoscopy can be very useful in the diagnosis by getting a biopsy. Another big takeaway from our discussion is that the patient really needs to be consuming gluten for the biopsy to be accurate. Therefore, if you get a positive serologic screen, don't tell the patient to abstain from gluten quite yet. Tell them to wait for the GI appointment. We understand that sometimes it can take a while to get into these GI appointments, and if the child is having a lot of issues, Dr Lee recommends reaching out to the gastroenterologist to see if you can get them an earlier appointment.

Hane: So, don't stop ingesting gluten until you follow up with gastroenterology. What else should we screen for after diagnosing celiac disease?

Chiu: There are a couple of different tests that Dr Lee uses in screening and follow-up. He recommends starting with a CBC to look for nutritional deficiencies, such as iron-deficiency anemia. He also checks a vitamin D level and a liver function panel. If he finds that celiac disease is poorly controlled, he'll do a DEXA scan and other screening to look for other autoimmune diseases, such as diabetes, thyroid diseases, and autoimmune hepatitis.

Hane: Let's talk about treatment. I assume that avoiding gluten is the mainstay of treatment. Is there anything else we should consider?

Chiu: That really is it — complete removal of gluten from the diet is the goal. Patients and their parents have to be conscious about cross-contamination of foods with gluten, because for some patients, even small amounts of gluten can cause significant issues and prevent them from having resolution of their symptoms. For school-age children, talk to the cafeteria about how they can make sure there's no cross-contamination. If you go out to eat, talk to the restaurant staff about how they handle their foods so you can get food that is gluten free. These are the difficulties that patients will experience when they eat.

Hane: It's a challenge, especially for young kids. Is there anything else that we learned on this episode that you want to share?

Chiu: Dr Lee talked about what he calls the four pillars of celiac management and monitoring to see if the patient is responding to the gluten-free diet:

  • Symptom improvement. Some patients get better immediately, but it can take weeks to months to see any changes, especially when one of those changes that you're looking at is growth.

  • Labs. The tTg and IgA titers will often improve over time.

  • Working with a dietitian. These patients have to have a close follow-up with a dietitian, with regular appointments to check whether they are on a gluten-free diet, answer any questions, and discuss barriers to a gluten-free diet.

  • Endoscopy, an optional pillar. It can be helpful if the patient continues to have symptoms or abnormal labs or doesn't improve on a gluten-free diet. Many kids will not need a repeat endoscopy if the other three pillars are going well. For comparison, it's a mainstay of follow-up in adults to repeat the endoscopy 12-18 months after diagnosis. But most children won't need another endoscopy.

Hane: Thank you all for joining us for another Medscape video recap of The Cribsiders pediatric podcast. You can listen to the full episode here.

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