Celiac disease is an autoimmune gastrointestinal disease. It’s permanent, meaning your child will be living with it their whole life.

In celiac disease, the immune system reacts to gluten as if it’s a germ invader. Gluten is a common protein in wheat, rye and barley. Celiac disease often develops after age 1, once a baby starts eating more solid foods that contain gluten.

This reaction causes damage to the small intestine’s villi. Villi are tiny fingerlike projections that help digest and absorb nutrients from food. When they’re damaged, it interferes with the body’s ability to digest and absorb nutrients.

Symptoms of celiac disease can develop at any time. Some kids don’t have short-term symptoms but can still develop damage in their small intestines. Even small amounts of gluten can damage their intestinal tract and can put them at higher risk for other diseases, whether they feel the symptoms or not.

Common GI symptoms of celiac disease include:

• Abdominal pain
• Constipation
• Diarrhea
• Poor weight gain or weight loss
• Vomiting
• Bloating

Celiac also causes non-GI symptoms, including:

• Iron-deficiency anemia
• Bone or joint pain
• Headaches or migraines
• Fatigue
• Poor height gain
• Delay in puberty

Our clinic also treats other gluten sensitivity conditions, including:

• Non-celiac gluten sensitivity: Gluten sensitivity is not the same as celiac disease. It can cause similar symptoms — such as bloating, stomach pain or fatigue — but it is not caused by an autoimmune reaction to gluten. Doctors aren't sure what causes it. Blood tests are negative and biopsies of the small intestine don’t show the damage seen in celiac disease.
• Wheat allergy: This is a classic food allergy, like an allergy to eggs, nuts or milk. It involves the immune system but in a different way than celiac disease. Wheat allergy can cause itching, swelling, hives, breathing trouble, stomach cramps or even anaphylaxis. It does not damage the small intestine.

There are no tests for non-celiac gluten sensitivity. If your child has a wheat allergy, they’ll need allergy testing by an allergist.

To find out if your child has celiac disease, they may need:

• Blood tests: To look for certain antibodies linked to celiac disease
• Endoscopy: To take samples and check for damage in the small intestine

The most important treatment is to make sure your child does not eat or drink anything with gluten.

If the tests determine that your child has celiac disease, they will need to follow a strict, lifelong, gluten-free diet. Our celiac dietitians will work with your family to develop a plan to stick to a gluten-free diet.

Your child’s intestinal tract will begin repairing itself as soon as they go gluten-free. They should start feeling better in weeks. If they don’t, contact your care team.

If your child is not growing well, they may need nutritional supplements to get them back on track.

The Bonnie Lynn Mechanic Celiac Disease Clinic at Children’s Wisconsin is a large, diverse team with expertise in celiac disease.

Our team gives you and your family the best and safest care possible. We provide a comfortable and welcoming environment during every step of your journey. We’re here for you, from initial diagnosis to long-term management.

In addition to world-class care, we have many resources for kids and families. We want your journey to be as smooth as possible.

Before Your First Visit

For your first visit to the celiac clinic, make sure to bring:

• Your child’s medical history
• Past test results
• List of medicines
• Reports from previous procedures

If you have any questions before our first meeting, please contact our team.

Our team includes:

• Pediatric gastroenterologists: Diagnose and manage celiac disease. They also perform endoscopies and interpret test results.
• Pediatric psychologist: Supports children and families in coping with their new normal.
• Pediatric nurse practitioner: Provides follow-up care, helps manage GI symptoms and supports families.
• Registered dietitians: Offer tailored gluten-free diet education, meal planning, guidance and nutrition support.

We also involve specialists from other areas of Children's Wisconsin in your child’s care. These may include endocrinologists, dermatologists and pathologists.

Your care team creates a welcoming, familiar and healing place for your family. We work together to ensure your child gets the best care possible.

Celiac disease services we offer

• Diagnosis and evaluation
• Tailored care plan
• Second opinions
• One-on-one and family counseling
• Nutrition counseling & education

If your child has celiac disease, we’ll help you learn to manage it. Celiac disease doesn't go away and research now shows that no one outgrows it.

Nutrition Advice From Our Team

Your family will have access to online lessons from our team that you can complete at your own pace. These online lessons will cover everything from how to read food labels, how to cook gluten-free and how to handle eating at a party. Our team will continue to support your family as questions arise and as you get more familiar with the diet. Our team can meet with you either virtually or in-person.

Your intestinal tract will begin repairing itself after beginning a gluten-free diet and your child will likely feel better within weeks. However, some people take longer than others. If, after a few weeks, your child isn’t feeling better, consult your care team.

Clinic Visits With Your GI Care Team

After learning the basics of celiac disease, you’ll meet with your physician every 3 to 6 months for the initial year and annually thereafter.

At these visits, we’ll assess:

• Celiac blood tests to ensure they are improving
• Strict compliance with the gluten-free diet
• Any nutritional deficiencies your child may be at risk for
• Any psychosocial impact on your child or your family
• Your child’s growth parameters
• The need to screen at-risk family members

It can take up to 2 years for your child’s labs to look normal. The higher they are to start with, the longer they can take. As long as the numbers are going down, things are on the right track.

After Care

Most kids with celiac disease do very well once they stop eating gluten. Damage to your child’s intestines from previous gluten exposure will heal. Other than the need to avoid gluten, your child can lead a normal life.

Accidental ingestion of even small amounts of gluten can trigger symptoms and damage. This common protein can show up in sauces and medicines. Even cross-contamination from other foods can be enough to cause a flare-up.

We’ll be here for continued monitoring help during flare-ups and long-term care. You can always contact our team if you have any questions.

• Sample school letter: Ready to communicate to your child’s school about his or her new diet requirements? Download a sample letter to share with your child’s school to ensure that proper plans are in place.
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