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Celiac Expert Q&A: Dr. Edward Hoffenberg

The NFCA Medical Advisory Board member talks about treating children with celiac disease in his practice.

By NFCA staff

While at Digestive Disease Week in Chicago this past May, NFCA Healthcare Relations Manager Kristin Voorhees met Edward J. Hoffenberg, MD, a pediatric gastroenterologist specializing in celiac disease. As Professor of Pediatrics at University of Colorado Denver School of Medicine and Director of the Center for Pediatric Inflammatory Bowel Diseases at Children’s Hospital Colorado, Dr. Hoffenberg has plenty of experience working with gluten-free kids. So, we picked his brain for a few tips and insights:

NFCA: How long have you been specializing in pediatric celiac disease?

Dr. Hoffenberg: Since 1995, so 16 years.

What’s the biggest challenge in working with kids? 

Helping kids learn for themselves. Allow them to try and fail, but still be safe.

When teaching celiac children about gluten, how do you make the danger clear without scaring them? 

I talk about things you can feel and experience, like abdominal pain, vomiting, diarrhea, growing taller [vs. lack of growth due to undiagnosed celiac]. Then I talk about things you cannot feel or experience, like thin bones and fracture risk.

You use role playing as a therapy in your clinic. How does it work, and what’s the benefit? 

Role playing helps the kids identify potential trouble areas, and helps them develop some skills for coping with these areas. For example, what words to use when you want to say “I can’t have gluten.”

How do you handle kids who cheat on their gluten-free diet? Does the child’s age have any effect on how you address it? 

Kids experience the same issues differently at different ages. It is certainly easier for the preschool age group and early elementary school. Middle and high school ages can be more difficult.

The first strategy is to develop an alliance with the older child. If they feel better gluten-free, then we talk about how to stay feeling good [and the risks of] testing boundaries and peer pressure.

If they do not have a lot of symptoms to begin with, it is harder. I try not to judge, but guide them if there starts to be clear health consequences of continued gluten exposure.

What particular strategies do you find to be successful in the asymptomatic pediatric population that patients or their parents can use?   

For the asymptomatic teen, I will do blood tests for anemia, iron deficiency, Vitamin D, and so on, as well as bone density assessment. I review these with them. I often encourage a trial of the gluten-free diet and see if they feel any different. I review that low gluten is not good enough, and so will follow more closely if they are on gluten, and provide support until they are ready to go gluten-free. [For more, see these tips from an asymptomatic celiac college student.]

Back-to-school is in swing: What are 3 things parents should do to ensure a safe and healthy school year?

  1. Help the child know what to say, what words to use: I have celiac disease, gluten sensitivity, etc.
  2. Empower the child to say: “No, I cannot have any. Not even a little bit. If it is unclear if it is gluten-free, then I will not eat it.”
  3. For elementary school kids:  Have a gluten-free snack always available in the classroom, for birthday parties and other special times.

This article originally appeared in Celiac Central: Bits & Bites.


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