🍞🚫 Celiac Disease in Children

Symptoms, who should be tested, how testing works, and what to do next

✅ Quick note: Celiac disease is an immune reaction to gluten (in wheat, barley, and rye) that can damage the small intestine. Some children have obvious tummy symptoms, but many have subtle signs like poor growth, anemia, fatigue, headaches, mouth ulcers, or constipation.
Most important rule: Do not start a gluten-free diet before testing.

🧾 Quick “At-a-glance” box (top of page)

Condition name + common names: Celiac disease (sometimes called “celiac sprue” in older medical writing)

2–3 line summary (what it is / why it happens / what it usually means):
Gluten triggers an immune reaction that injures the small intestine lining (where nutrients are absorbed). This can cause diarrhea, belly pain, and bloating—or show up as poor growth, iron deficiency anemia, fatigue, constipation, headaches, or delayed puberty. With a confirmed diagnosis and a strict gluten-free diet, most children do very well.

Who it affects (typical ages): Any age (toddlers, school-age children, teens). Symptoms may be gradual and missed for months or years.

✅ What parents should do today:

• Keep gluten in the diet until testing is complete.
• Track symptoms (stool, pain, energy) and any growth concerns.
• Book a clinic visit for the correct celiac blood tests.

⚠️ Red flags that need urgent/ER care:

• Signs of dehydration (very low urine, very sleepy, very dry mouth)
• Persistent vomiting (especially green/bright yellow bile)
• Severe weakness, fainting, or child looks very unwell
• Large blood in stool or black/tarry stools

🟡 When to see the family doctor/clinic soon:

• Poor growth, weight loss, fatigue, pallor (possible anemia)
• Chronic diarrhea, persistent belly pain/bloating, constipation that won’t improve
• Mouth ulcers, headaches, delayed puberty
• Higher risk: type 1 diabetes, autoimmune thyroid disease, first-degree relative with celiac disease

🧠 What it is (plain language)

Celiac disease is an immune condition (not an infection). When a child with celiac eats gluten, the immune system reacts and can damage the small intestine lining. Over time, that can lead to:

• Poor absorption of nutrients (especially iron and some vitamins)
• Poor growth or weight loss
• Low energy and tummy symptoms

✅ Important: Celiac disease is not the same as “gluten intolerance,” and it is not a typical food allergy. The treatment is still a strict gluten-free diet—but the diagnosis must be confirmed properly.

What part of the body is involved? (small diagram required)

Common myths vs facts (short)

• Myth: “Celiac always causes diarrhea.”
  Fact: Many children have constipation, belly pain, anemia, fatigue, headaches, or growth issues instead.
• Myth: “Let’s go gluten-free first and see if it helps.”
  Fact: Going gluten-free early can make tests falsely normal and delay or miss the diagnosis.
• Myth: “A little gluten won’t matter.”
  Fact: In celiac disease, even small exposures can keep inflammation active.

🧩 Why it happens (causes & triggers)

Common causes

• Genetic tendency (often runs in families)
• Gluten triggers an immune reaction
• The small intestine lining becomes inflamed, affecting absorption

Less common but important causes (brief)

Other conditions can mimic celiac symptoms (for example: constipation, thyroid disease, IBD, infections). Your clinician decides what else to evaluate based on your child’s overall picture.

Triggers that worsen symptoms

• Ongoing gluten intake (including “hidden gluten”)
• Cross-contamination (shared toaster, cutting boards, flour dust, shared spreads)
• Illness/stress may temporarily worsen symptoms, but gluten is the main driver of ongoing injury

Risk factors (age, family history, exposures)

• First-degree relative with celiac disease
• Type 1 diabetes
• Autoimmune thyroid disease
• Down syndrome or Turner syndrome
• Selective IgA deficiency
• Unexplained iron deficiency anemia, poor growth, chronic GI symptoms

👀 What parents might notice (symptoms)

Typical symptoms (most common first)

• Belly pain or bloating
• Diarrhea or constipation
• Fatigue/low energy
• Poor appetite or persistent picky eating beyond expected
• Slow growth or weight loss
• Headaches
• Mouth ulcers
• Pale skin (possible anemia)

Symptoms by age group

Infant / toddler

• Poor weight gain or slowed growth
• Chronic diarrhea or bulky/foul stools (sometimes constipation)
• Bloating, belly pain
• Irritability, low energy

School-age

• Recurrent abdominal pain, nausea
• Fatigue, headaches
• Constipation or diarrhea
• Iron deficiency anemia
• Slower growth

Teens

• Fatigue, headaches, abdominal symptoms
• Iron deficiency anemia
• Delayed puberty
• Short stature compared with family expectations
• Mood changes can occur (often from fatigue and chronic symptoms)

What’s normal vs what’s not normal

• ✅ Can still be celiac: mild belly pain, constipation, “just tired,” mild anemia
• ⚠️ Not normal: dehydration, persistent vomiting, significant weight loss, fainting, black/tarry stools, large bleeding

Symptom trackers (what to write down: timing, severity, stool, hydration, etc.)

• Stool pattern (frequency, diarrhea/constipation, urgency, accidents)
• Belly pain (timing, location, triggers)
• Energy, sleep, school performance
• Appetite and food patterns
• Weight/height trend if known
• Headaches, mouth ulcers
• Hydration (urine frequency, dizziness)
• Family history or autoimmune diagnoses

🏠 Home care and what helps (step-by-step)

What to do in the first 24–48 hours

✅ Do this now:

• Do not start gluten-free if testing is planned.
• Book a clinic visit for the correct celiac blood tests.
• Start a symptom tracker + a 3-day food/drink diary.
• Keep hydration steady.

Supportive care: fluids, nutrition, sleep, comfort measures

• Hydration and regular meals/snacks
• Gentle foods if stomach upset is present
• If constipation: increase fluids and fiber gradually; consider a clinician-guided stool-softening plan if needed
• Prioritize sleep (fatigue is common)

Practical routines (relevant examples)

• Regular meal/snack routine (avoid grazing all day)
• Bathroom routine after meals if constipation is present
• Keep school attendance as normal as possible if your child is stable (routine helps)

What usually makes it worse (foods, activities, meds, behaviors)

• Stopping gluten before testing
• Unplanned diet restrictions that reduce calories/nutrients
• Ongoing constipation without a structured plan
• Frequent ibuprofen on an empty stomach (can irritate the stomach and confuse the picture)
• Pressure-filled meal battles that reduce intake

⛔ What NOT to do (common mistakes)

• Do not start a gluten-free diet before testing unless a clinician specifically instructs you to.
• Do not use home “gluten sensitivity tests” as a substitute for medical testing.
• Do not assume normal stools mean no celiac.
• Do not stop follow-up after diagnosis—monitoring is important.

“Avoid unless your clinician told you” list

• Major diet restrictions (multiple food groups removed) without dietitian guidance
• High-dose supplements “for gut healing” without medical advice

When not to give over-the-counter medications (age limits, dose cautions)

• Avoid anti-diarrhea medicines in children unless a clinician directs it—especially if there is blood, fever, or dehydration risk.
• If belly pain needs frequent pain medicine, book a medical review.

🚦 When to worry: triage guidance

🔴 Call 911 / Emergency now

• Collapse, severe weakness, very hard to wake
• Severe breathing difficulty

Example: “My child fainted and is not acting right.”

🟠 Same-day urgent visit

• Dehydration (no urine 8–12 hours, very dry mouth, very sleepy/dizzy)
• Persistent vomiting (especially green/bright yellow bile)
• Large blood in stool or black/tarry stools
• Child looks very unwell

Example: “They can’t keep fluids down and haven’t peed all day.”

🟡 Book a routine appointment

• Ongoing belly pain, bloating, diarrhea, constipation
• Fatigue, headaches, mouth ulcers
• Poor growth/weight loss or delayed puberty
• Iron deficiency anemia
• High-risk group (type 1 diabetes, autoimmune thyroid disease, first-degree relative)

Example: “Iron keeps coming back low and they’re tired for months.”

🟢 Watch at home

• Mild symptoms with stable hydration and energy while awaiting clinic appointment/testing
• No red flags and your child is otherwise functioning normally

🩺 How doctors diagnose it (what to expect)

What the clinician will ask

• Symptom details and timeline
• Stool pattern and belly pain
• Growth and appetite
• Family history of celiac/autoimmune disease
• Whether gluten is still being eaten (this matters)

Physical exam basics

• Accurate height/weight and growth curve review
• Signs of anemia (pallor), dehydration
• Belly exam
• Puberty assessment if delayed puberty is a concern

Possible tests (and why)

Celiac blood tests (while still eating gluten):

• A celiac antibody test (often called “tTG”)
• A test to confirm normal IgA level (important to interpret results)

If tests are positive (or suspicion is high), confirmation depends on local pediatric pathways and may involve:

• Referral to pediatric gastroenterology
• Sometimes endoscopy with small intestine biopsies
• Sometimes a no-biopsy confirmation pathway in selected children (program-dependent)

What tests are usually not needed (helps reduce anxiety)

• Removing gluten as a “test” before proper bloodwork
• Broad testing without doing the correct celiac blood tests first when the history fits

What results might mean (simple interpretation)

• Negative tests while eating gluten: celiac is less likely (your clinician interprets in context)
• Positive tests: higher likelihood; confirmation pathway matters
• IgA deficiency: different antibody tests may be needed (your clinician guides this)

🧰 Treatment options

First-line treatment

✅ Strict gluten-free diet (lifelong once diagnosis is confirmed)

If not improving (next steps)

• Dietitian review (hidden gluten and cross-contamination are common)
• Check and replace nutrients if needed (iron, vitamin D, sometimes others)
• Reassessment if symptoms persist despite confirmed strict gluten-free diet

Severe cases (hospital care)

• Significant dehydration, severe vomiting
• Severe weakness or concerning anemia symptoms
• Child looks very unwell

For each treatment, include key details

Gluten-free diet (core treatment)

• What it does: stops immune injury and allows healing
• How to do it (practical tips):
  • Learn gluten sources (wheat, barley, rye)
  • Read labels every time (ingredients change)
  • Prevent cross-contamination (separate toaster, clean surfaces, avoid shared spreads)
  • School plan (safe lunch/snacks; clear rules about food sharing)
• Common side effects: feeling overwhelmed early; accidental exposures happen
• Serious side effects (rare but important): ongoing inflammation if gluten exposure continues (poor growth/anemia can persist)
• When to stop and seek help: persistent symptoms, weight loss, ongoing fatigue, dehydration
• Interactions (key ones only): gluten can hide in sauces, soups, processed foods, seasonings, shared fryers, and flour dust

⏳ Expected course & prognosis

Typical timeline (“most kids improve in X–Y days/weeks”)

• Many kids feel better within weeks after strict gluten-free diet begins
• Energy and stool patterns improve gradually
• Growth catch-up can take months (longer if diagnosis was delayed)
• Blood tests used for monitoring usually improve over time (timeline varies)

What “getting better” looks like

• Better appetite and energy
• Less belly pain/bloating
• Improved stool pattern
• Growth curve stabilizes and improves

What “getting worse” looks like

• Continued weight loss or fatigue
• Persistent diarrhea or vomiting
• Ongoing anemia
• New concerning symptoms (blood in stool, black stools)

When symptoms should be gone

Some symptoms improve quickly, others (especially fatigue and growth) can take longer. If symptoms persist despite strict diet, reassessment is needed.

Return to school/daycare/sports guidance

• Return as soon as hydrated and comfortable
• Provide a clear school plan for gluten-free meals/snacks and food events

⚠️ Complications (brief but clear)

Common complications (what they look like)

• Iron deficiency anemia (fatigue, pallor, low energy)
• Poor growth or delayed puberty
• Low bone mineral density (vitamin D/calcium issues)

Rare serious complications (red-flag reminder)

• Severe malnutrition (uncommon)
• Persistent symptoms despite strict diet → reassessment (cross-contamination or alternate diagnoses)

🛡️ Prevention and reducing future episodes

Celiac disease itself is not preventable, but complications are reduced by:

• Correct diagnosis (testing while still eating gluten)
• Strict gluten-free diet once confirmed
• Ongoing follow-up and nutrition monitoring
• Family/caregiver education on cross-contamination
• A clear recurrence-prevention plan (label-reading + school/travel routines)

🌟 Special situations

Infants

• Symptoms can be subtle; dehydration and poor feeding require prompt assessment.

Teens

• Social eating and school events need planning; fatigue and low iron are common presentations.

Kids with chronic conditions (asthma, diabetes, immunosuppression)

• Type 1 diabetes and autoimmune thyroid disease increase risk—testing threshold is lower.
• Coordinate diet changes with the care team to keep nutrition balanced.

Neurodevelopmental differences/autism

• Keep changes structured and predictable; involve a dietitian to avoid unnecessary restriction.

Travel considerations

• Pack gluten-free snacks; learn label terms; plan for cross-contamination.

School/daycare notes (what teachers should know)

• Gluten-free diet is strict and medical
• Avoid food sharing
• Plan for celebrations, crafts with flour, and snack policies

📅 Follow-up plan

When to follow up and with whom

• Follow-up with your clinician and dietitian after diagnosis
• Pediatric gastroenterology follow-up as advised by your local pathway

What would trigger earlier follow-up

• Persistent symptoms despite strict diet
• Weight loss or poor growth
• Persistent fatigue/anemia
• Repeated suspected gluten exposures

What to bring to the appointment

• Symptom diary, stool notes
• Growth measurements (if known)
• Food diary (including drinks)
• Medication/supplement list
• Questions about label-reading and cross-contamination

❓ Parent FAQs

“Is it contagious?”

No.

“Can my child eat ___?”

If diagnosed, foods must be gluten-free. Many foods are naturally gluten-free (fruit, vegetables, meat, fish, eggs, beans, rice, potatoes) if not contaminated.

“Can they bathe/swim/exercise?”

Yes.

“Will they outgrow it?”

Celiac disease is lifelong, but most children do extremely well with a strict gluten-free diet.

“When can we stop treatment?”

Once confirmed, the gluten-free diet is lifelong.

🧾 Printable tools (high-value add-ons)

🧾 Printable: One-Page Action Plan

Suspected Celiac Disease

• Keep gluten in the diet until testing is complete
• Book a visit for celiac blood tests
• Track symptoms for 1–2 weeks (stool, pain, energy, appetite)
• Bring family history (celiac/autoimmune) and any growth data

⚠️ Urgent care if: dehydration (very low urine, very sleepy), persistent vomiting (especially green/bright yellow bile), black/tarry stools or large bleeding, severe weakness/fainting, or child looks very unwell.

🧾 Printable: Medication schedule box

(Use only if your clinician prescribes supplements like iron/vitamin D.)

• Morning: ____________________ Time: ______
• Afternoon: __________________ Time: ______
• Evening: ____________________ Time: ______
• Notes: ______________________________________

🧾 Printable: Symptom diary / tracker

Date: _______

• Stool pattern (diarrhea/constipation): _____________________________
• Belly pain (0–10) + timing: _______________________________________
• Energy (good/okay/low): __________________________________________
• Appetite (good/okay/low): _________________________________________
• Headaches/mouth ulcers: __________________________________________
• Hydration (urine frequency): ______________________________________
• Any red flags (vomiting, dehydration, bleeding): ____________________

🧾 Printable: “Red flags” fridge sheet

⚠️ Urgent care if: dehydration (very low urine, very sleepy), persistent vomiting (especially green/bright yellow bile), black/tarry stools or large bleeding, severe weakness/fainting, or child looks very unwell.

🧾 Printable: School/daycare instructions page

This child requires a strict gluten-free diet for medical reasons:

• No food sharing
• Parent-provided gluten-free snacks/meals
• Avoid flour-based crafts and shared foods unless confirmed gluten-free
• Notify parents before food events and celebrations
• Encourage inclusion without singling the child out

🧡 Safety disclaimer

This guide supports—not replaces—medical advice. If you are worried about your child, trust your instincts and seek urgent medical assessment.

This guide was fully developed & reviewed by Dr. Mohammad Hussein, MD, FRCPC ROYAL COLLEGE–CERTIFIED PEDIATRICIAN & PEDIATRIC GASTROENTEROLOGIST
Board-certified pediatrician and pediatric gastroenterologist (Royal College of Physicians and Surgeons of Canada) with expertise in inflammatory bowel disease, eosinophilic gastrointestinal disorders, motility and functional testing, and complex nutrition across diverse international practice settings.
To book an online assessment Email Dr. Hussein’s Assistant Elizabeth Gray at: Elizabeth.Gray@pedsgimind.ca
In the email subject, please write: New Assessment Appointment with Dr. Hussein
Important: This appointment is completely online as Dr. Hussein is currently working overseas.
This service is not covered by OHIP