Caregiver instructions for a child with celiac disease

If you are looking after a child with celiac disease — as a babysitter, grandparent, relative, or family friend — this page is for you. It is a short, practical checklist of what to ask, what to check, and what to hand over. It is not medical advice, and it does not replace the plan the child’s parents and their doctor have put together.

Before the caregiver arrives

• Ask which foods the family has already approved for this child, and where those foods are kept.
• Ask which foods to keep away from the child, and whether the family avoids anything else.
• Ask whether the child has their own toaster, cutting board, utensils, or spreads — and where those live.
• Ask what the child will eat while you are in charge, and whether it is already packed or you are preparing it.
• Ask for a phone number where you can reach a parent during the visit, and a backup number.
• Ask the parents to fill in the hand-off sheet before you arrive, so you are working from their words rather than your own assumptions.

At mealtime

• Read the label on every packaged item, every time. Ingredients and suppliers change.
• Look for a “gluten-free” label, and still read the ingredient list — “wheat-free” is not the same as “gluten-free”.
• Check the ingredient list for wheat, barley, and rye, and for ingredients made from them.
• Use the child’s own toaster, cutting board, utensils, and spreads if the family has set them aside.
• Wash your hands and clean the work surface before you start.
• Keep the child’s food separate while you prepare and serve it.
• Use a fresh portion of anything spreadable — butter, jam, peanut butter — rather than a tub that bread has been dipped into.
• If you are not sure whether something contains gluten, do not serve it. Call the parent and ask.

Snacks, treats and parties

• Ask the parent before offering any food that did not come from the family.
• Set aside a snack the child can have, so they are not left out when others are eating.
• Check the labels on sweets, cakes, and party food — they often contain wheat or barley.
• Keep the child’s food on a separate plate, away from shared bowls and platters.
• If you are hosting, keep the packaging so the parent can check it afterwards.
• Ask the parent whether the child can have the same treat as everyone else, or whether you should offer the one they sent.

If something goes wrong

Call the parent first. Parents: fill in your own plan with your child’s doctor.

Hand them the sheet

• The hand-off sheet is a one-page form the parents fill in and give to each caregiver.
• It holds the child’s approved foods, the label checks, the cross-contact steps, and the parent’s own instructions.
• Print a copy for each person who looks after the child — babysitter, grandparent, relative, childcare, or teacher.
• Update it when the child’s food or routine changes, and hand out the new version.

Example — not a real child

A filled-in hand-off sheet, so you can see what one looks like. Every detail here is made up.

Child’s name

Sam (Example — not a real child)

Parent / guardian

Alex R.

Best phone

555-0100

Backup contact

Jordan R. — 555-0101

Caregiver / setting

Grandparent, Saturday afternoon

Dates / times

Saturday, 1–6 pm

What celiac disease means for this child

“Sam has celiac disease. Sam has to avoid wheat, barley and rye, even in small amounts. Sam does not get a rash or a stomach ache right away, so it is easy to miss.”

Daily needs

“Sam eats at 12:30. Please keep Sam’s food separate from other kids’ food.”

Packed items

“Packed lunch box in the fridge, top shelf”

Approved foods / exact brands

“Brand X gluten-free bread (blue label), Brand Y plain rice crackers; whole foods: fruit, carrots, plain yogurt, cheese sticks, hard-boiled eggs”

Before serving any food

All six checks ticked

Preparation + cross-contact

All eight checks ticked. “Sam has a separate toaster (marked with a green dot) and a separate tub of butter. Please use the green cutting board.”

Eating away from home

“Use food packed by the family”, “Ask the parent/guardian before ordering”

What our family wants watched for

Left blank in this example. Parents fill this in only with what their child’s care team has told them to watch for.

If there is a question or possible exposure

Call first: Alex R. — 555-0100. Parent instructions: “Call us first — we will tell you what to do next.”

Situation-specific notes

“Grandparent’s house, Saturday afternoon”

Signed

Alex R.

Sources

• NIDDK — Eating, Diet, & Nutrition for Celiac Disease — reading labels for wheat, barley and rye, checking for gluten-free labeling, storing and preparing food separately to prevent cross-contact, and asking about ingredients and preparation when eating out.
• Celiac Disease Foundation — Gluten-Free Foods — the naturally gluten-free food groups, and why “wheat-free” does not necessarily mean “gluten-free”.

If you use the Care Passport in the app, you can also share the details you choose with a caregiver through a link and passcode. New to all of this? The Academy walks through the basics — the first two lessons are free.