Celiac Disease in Children: Treatment and Follow-Up

Your child has been diagnosed with celiac disease. Now what?

The Gluten-Free Diet

The only treatment for celiac disease is a 100% gluten-free diet, and it must be followed for life. It is best to transition your child to a gluten-free diet as soon as possible after diagnosis. The sooner your child is gluten-free, the sooner he or she will stop suffering and start healing.

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Each child reacts to the gluten-free diet differently. Some see improvement within a few days; other take months before symptoms subside. The important thing is to maintain a 100% gluten-free diet at all times.

The Treatment Team

While a celiac disease diagnosis may seem overwhelming, rest assured: you’re not alone. There are several healthcare professionals who can help your child maintain a healthy gluten-free lifestyle.

Your child’s support team may include:

Pediatrician
Pediatric gastroenterologist
Registered dietitian or nutritionist
School nurse
School psychologist/social worker
Teacher
Sports coach
And most importantly, you!

Celiac Disease and Gluten-Free Support Groups

In addition to the healthcare team, there are several celiac disease support groups that can help you and your child navigate any challenges.

Raising Our Celiac Kids (R.O.C.K.) is a nationwide network of support groups specifically for parents of gluten-free kids.
Many children’s hospitals host celiac disease support group meetings. Contact your local children’s hospital or Celiac Center to find out what meetings may be available.
Online communities and forums where you can talk to other parents living with celiac disease, including the Beyond Celiac Facebook page.

Celiac Disease Follow-Up: What to Expect

When your child is diagnosed with celiac disease, their doctor will likely recommend that your child return for follow-up appointments. Return appointments are a good time to express any challenges you’ve had with sticking to a gluten-free diet. It also will ensure that your child’s health is getting back on track.

Follow-up may include:

Blood work Your child’s doctor will order follow-up blood work to ensure their immune system isn’t attacking the intestines anymore. This is typically the same bloodwork your child received in order to get diagnosed. Sometimes, the doctor will also check micronutrient and vitamin levels, such as vitamin D and iron, to ensure your child is getting enough nutrients. Children with drastically low nutrient levels may need supplements until their intestines heal.
Endoscopy Patient do not typically undergo another endoscopy. This is reserved for more complicated cases where the initial diagnosis was unclear or symptoms are ongoing, despite have a normal repeat celiac disease blood test.

Family Screening

Celiac disease is a genetic autoimmune disease, so having a child with celiac disease means your biological family members are also at risk for developing CD. Encourage all blood relatives to get tested for celiac disease. Check out Seriously, Celiac Disease, a Beyond Celiac campaign that will teach you the most effective way to have a conversation with your relatives.

If you test negative for celiac disease, your doctor may recommend that you repeat testing every 2-3 years, or earlier if symptoms of celiac disease develop. Remember, celiac disease can develop at any age, so it’s important to monitor your body’s response to gluten.

Restoring Health, Reclaiming Life

Aside from a few dietary changes, children with celiac disease can enjoy a normal, healthy life. It’s important to foster a positive outlook in your child. Celiac disease may define what they eat, but it doesn’t have to define how they live!

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