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. The sooner your child is gluten-free, the sooner he or she will stop suffering and start healing.
Beyond Celiac Resources:
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:
- Pediatric gastroenterologist
- Registered dietitian or nutritionist
- School nurse
- School psychologist/social worker
- 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.
- R.O.C.K (Raising Our Celiac Kids) 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: There are many 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, the doctor will likely recommend that your child return for follow-up appointments. This is 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 there is intestinal healing. This is typically the same bloodwork your child received in order to get diagnosed. Sometimes, your doctor will also check micronutrient and vitamin levels, such as vitamin D and iron.
- Endoscopy: Your child should typically not need to 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.
Celiac disease is a genetic autoimmune disease, so having a child with celiac disease means your ibiological family members are also at risk. Encourage all blood relatives to get tested for celiac disease. Check out Seriously, Celiac Disease, a Beyond Celiac campaign which 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!