Celiac disease and starting gluten

What celiac disease is

Celiac disease (spelled coeliac in the UK) is a lifelong condition in which the immune system reacts to gluten, a protein in wheat, barley and rye. The reaction damages the lining of the small intestine, so the body can’t absorb nutrients properly (AAP, NHS). In children, that can affect growth.

It is not a food allergy. A wheat allergy is a fast, allergic reaction to wheat protein, which is tested for in a different way (AAP). If your baby gets hives or a rash, or vomits once, soon after eating wheat, stop giving it and talk to your pediatrician, GP or health visitor before offering it again. See introducing allergens.

Call 911 if, after eating, your baby has trouble breathing or wheezing, sudden swelling of the lips, face, tongue or throat, or becomes floppy, very pale or very sleepy.Call 999 if, after eating, your baby has trouble breathing or wheezing, sudden swelling of the lips, face, tongue or throat, or becomes floppy, very pale or very sleepy (NHS).Call your local emergency number (such as 112 in Europe or 000 in Australia) if, after eating, your baby has trouble breathing or wheezing, sudden swelling of the lips, face, tongue or throat, or becomes floppy, very pale or very sleepy. These can be signs of anaphylaxis: see signs of anaphylaxis for what to do while you wait.

Celiac disease affects at least 1 in 100 people in the UK (NHS). It only happens in people who carry certain genes (called DQ2 and DQ8) and who eat gluten. About 30% of people carry these genes, but only about 3% of them develop celiac disease (NIDDK).

When to start gluten

Gluten-containing foods can be introduced from around 6 months, like any other food. The NHS lists foods containing gluten (wheat, barley and rye) among the foods to introduce one at a time from around 6 months, and to keep in your baby’s usual diet once they’ve had them without a problem.

Waiting longer doesn’t prevent celiac disease. Two large trials published in 2014 looked at babies with a close relative who had celiac disease:

• In one, babies who were given a very small daily amount of gluten between 16 and 24 weeks of age (about 4 to 6 months) were no less likely to have celiac disease by age 3 than babies given a placebo (Vriezinga et al.). This was a research setting, not advice to start solids at 4 months.
• In the other, babies who started gluten at 12 months instead of 6 months developed celiac disease later, but by age 5 just as many had it (Lionetti et al.). Breastfeeding didn’t change the risk in either trial.

Based on this evidence, ESPGHAN (the European society of children’s gut specialists) says gluten can be introduced at any time between 4 and 12 months, and that the advice applies to all babies. (The AAP and NHS still recommend starting solid foods at around 6 months.) It also suggests avoiding large amounts of gluten in the first weeks after you start and during infancy, because observational studies link eating more gluten to higher risk. NIDDK notes the same research. No one has set an exact amount, so offer gluten foods as a normal part of meals, not at every meal in big portions.

Don’t delay or cut out wheat without medical advice, even if celiac disease runs in your family. It doesn’t lower the risk, and it can make diagnosis harder later (see testing, below).

Easy first gluten foods

Serve these in a safe texture for your baby’s age (each food page shows how):

• Pasta, cooked until soft
• Bread, cut into strips
• Couscous stirred into a mash
• Barley, cooked very soft
• Egg noodles (these also contain egg)
• Wheat-based infant cereal, without added sugar

Oatmeal doesn’t contain gluten itself, so it doesn’t count as a gluten food (for example, before a celiac test). Oats can pick up gluten if they’re produced in the same place as wheat, barley and rye, and a small number of people with celiac disease also react to pure oats (NHS).

Symptoms to watch for

Symptoms vary a lot, and some children have none at all (AAP). In babies and young children, the AAP says the classic signs are poor growth starting after gluten foods begin, diarrhea and gas. Other possible signs (NHS, NIDDK):

• diarrhea that lasts, often with large, pale, greasy or very smelly poop
• a swollen or bloated tummy, or tummy pain
• constipation
• vomiting
• not gaining weight or growing as expected (faltering growth or failure to thrive)
• being unusually irritable or tired
• iron deficiency anemia that doesn’t get better with iron (AAP)

Many of these have other, more common causes. If you notice them, talk to your pediatrician, GP or health visitor. Don’t stop gluten first: see below.

Family history and higher risk

The AAP says children in these groups have a higher risk and should be considered for testing:

• a first-degree relative (parent, brother or sister) with celiac disease
• Down syndrome, Turner syndrome or Williams syndrome
• type 1 diabetes
• autoimmune thyroid disease
• selective IgA deficiency

In the UK, the NHS says first-degree relatives of people with celiac disease should be tested. Neither country screens all children routinely (NHS, NIDDK). If celiac disease runs in your family, tell your pediatrician or GP and ask when testing makes sense for your child.

Testing only works with gluten in the diet

Celiac tests look for an immune reaction to gluten. If your child isn’t eating gluten, the reaction fades and the tests can come back falsely normal.

• Your child needs to be eating gluten. NICE says testing shouldn’t be offered to babies who haven’t started gluten yet. The AAP says a child should keep eating gluten until all testing is complete.
• The first test is a blood test for antibodies (tissue transglutaminase IgA, along with total IgA). If it’s positive, a specialist usually confirms the diagnosis, sometimes with a biopsy taken during an endoscopy under sedation (AAP, NHS, NICE).
• Don’t start a gluten-free diet before diagnosis is confirmed by a specialist, even if a blood test is positive (NHS, NICE).
• Genetic tests can show whether a child carries the risk genes, but most people with those genes never get celiac disease, so a gene test alone can’t diagnose it (NIDDK).

If your child is diagnosed, the only treatment is a strict, lifelong gluten-free diet. Ask for a referral to a dietitian, because gluten-free processed foods are often low in iron and B vitamins (AAP).

Where US and UK advice differs

• How much gluten before testing. NICE (UK) advises eating some gluten in more than one meal every day for at least 6 weeks before testing. US sources (AAP, NIDDK) say to keep eating gluten until testing is complete, without a set amount. Your doctor will tell you what your child needs.
• Testing relatives. The NHS says first-degree relatives should be tested. The AAP says they should be considered for testing, and NIDDK says relatives should talk with their doctor about whether to be tested.
• Starting gluten. Both the NHS and US sources treat wheat as a normal first food from around 6 months. ESPGHAN, a European society, gives a window of 4 to 12 months.

See baby poop after starting solids for what’s normal once solids begin, and iron-rich first foods for keeping iron up.