My Child Has Celiac Disease: What Do I Need to Know? FAQs Answered by Boston Children’s Hospital Doctor

Gluten-Free Living asked Dascha C. Weir, MD, associate director of the Boston Children’sDr. Dascha Weir Hospital Celiac Disease Program, your questions on raising gluten-free children and keeping your kids with celiac disease healthy.

“I’ve learned through the years that the cornerstones of a successful gluten-free diet are a solid base of knowledge and ongoing support,” says Weir, a member of Gluten-Free Living’s Medical Advisory Board. 

When discussing the importance of a gluten-free diet for celiac disease patients, Weir’s message is succinct: “A strict gluten-free diet is the only current treatment for celiac disease, and I prescribe it regularly to children with celiac disease.”

Here are Weir’s answers to your questions about raising a happy, healthy gluten-free kid.

My child was just diagnosed with celiac disease and I feel overwhelmed. What are the first steps I need to take?

Dr. Weir: Adjusting to a new medical diagnosis and facing the details entailed in initiating a major change in your child’s diet is overwhelming.

The first step is to take a deep breath, remind yourself that you and your child can do this and then get ready to learn a lot of new information. No one expects you to already know everything about the gluten-free diet or to have already figured out how to actually make it work for your child and family. This will come with time.  

The second step is to start looking at ingredient lists and remove the obvious sources of wheat, barley, rye and oats from your child’s diet.  

The third step is to seek help. I recommend consulting a knowledgeable dietician who understands celiac disease so that you can begin to learn all the nitty gritty details about a strict gluten free diet. I also highly recommending connecting with other families with children with celiac disease as their support  and guidance can be invaluable.  

Making early connections with a neighbor, a friend of a friend, an online group or a local support group in your area can really help ease the stress in the early days following a diagnosis of celiac disease. 

My child has been on the gluten-free diet for two years. Is it likely that any intestinal/mucosal damage has been repaired by now? 

Dr. Weir: If your child has been on a strict gluten-free diet with vigilance to avoid cross-contamination for two years, they are likely to have intestinal healing with resolution of inflammation and repair of mucosal damage.  

Full mucosal recovery can take up to one to two years. However, if your child is still ingesting even small amounts of gluten, they are at risk of ongoing intestinal damage. If they are having ongoing symptoms or growth concerns or if their celiac serologic tests have not normalized, it is important to have a discussion with their gastroenterologist about whether repeat endoscopy is needed to look for ongoing mucosal damage. 

Is there any research you’re following or particularly interested in related to celiac disease, specifically in kids? 

Dr. Weir: Research related to improving how we diagnose celiac disease and how we best care for and support children after the diagnosis is very valuable to me as this is what I do every day in my clinic. However, I am also very hopeful that we will have other treatment options for kids with celiac disease beyond the gluten free diet so am following that area of celiac research closely. 

My child was diagnosed with celiac disease and is still experiencing symptoms after going gluten free. Why could that be?

Dr. Weir: Most children with celiac disease feel better on a gluten-free diet within weeks to months on the diet. If your child has been on a gluten-free diet for longer than a few months and is still having symptoms, it’s time to circle back and touch base with your celiac team.  

The most common causes of ongoing or recurrent symptoms in kids with celiac disease include ongoing gluten exposure, lactose intolerance, constipation and functional abdominal pain. 

How can I make sure my kids get enough nutrients on the gluten-free diet?

Dr. Weir: I recommend working with a dietician to ensure that your child’s nutritional goals are being met. The best approach is to aim for a varied selection of low and unprocessed gluten-free foods including sources of calcium and plenty of fruits and vegetables.  Additionally, for kids with celiac disease, I recommend a gluten-free multivitamin. 

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