The first time a parent sits down with me after their child's coeliac diagnosis, there's usually a notebook involved. Pages of questions, scribbled at midnight after hours of Googling. Can she still go to birthday parties? Do I need to throw out my toaster? Is he going to be missing out on nutrients? Should we all just go gluten-free?
If that sounds familiar, please know you're not alone and you're not doing anything wrong by feeling overwhelmed. A diagnosis often brings relief (finally, an answer!) mixed with a lot of worry about what comes next.
And it isn't only parents of children with coeliac disease who ask me these questions. Many families come to me because they suspect gluten isn't agreeing with their child, or because they've read about gluten-free eating and wonder whether it would help the whole family feel better.
After years of working with families as a Registered Nutritional Therapist, I've noticed the same three questions come up again and again. So, in this post, I'll answer them as honestly and practically as I can.
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Question 1: Does my child really need to be strictly gluten-free and should we test first?
The short answer is: it depends on why your child is reacting to gluten, which is exactly why getting the right diagnosis matters so much.
Gluten is a group of proteins found in wheat, barley and rye. For most people, it causes no problems at all. But reactions to gluten sit on a spectrum and where your child sits on that spectrum changes everything.
If your child has coeliac disease (celiac)
Coeliac disease is an autoimmune condition. When a child with coeliac disease eats gluten, their immune system reacts to fragments of gluten that the gut can't fully break down. The inflammation that follows flattens the tiny finger-like villi that absorb nutrients from food.
It's far more common than most parents realise. Studies now put coeliac disease at up to 1.65% of children worldwide and some European studies have found rates as high as 2.9%. In a busy primary school, there's very likely more than one child with it. Yet most go undiagnosed: research from Bristol estimated that at least 83-91% of children with coeliac disease had not been picked up. In 2023, Italy became the first country in the world to pass a law for national coeliac screening in children.
Genetics load the gun, but they don't pull the trigger. Almost everyone with coeliac disease carries the HLA-DQ2 or HLA-DQ8 genes, yet around 4 in 10 people of European ancestry carry them too and only a small minority ever develop the disease. Even identical twins don't always both get it. That's why, in functional medicine, we're so interested in the other pieces of the puzzle: the gut microbiome, infections, nutrient status and the health of the gut lining.
Coeliac disease doesn't always look like a tummy problem (celiac)
For a long time, the textbook child with coeliac disease had chronic diarrhoea, a swollen tummy and wasn't growing well. That picture has changed. Comparing children diagnosed in 1990-2011 with those diagnosed in 2012-2020, chronic diarrhoea fell from 47% to 30% of cases, while constipation rose from 4% to 19%. Recurring stomach ache is still the most common gut symptom, especially in older children.
In fact, more than 60% of children now present mainly with symptoms outside the gut. "Silent" coeliac disease is rarely truly silent; the signs are just easy to put down to something else. In clinic, these are the signs I ask parents about:
eczema that doesn't respond to the usual creams
frequent infections, coughs, colds or tummy bugs
anxiety, low mood, poor concentration or ADHD-type symptoms
regular headaches
marks, ridges or discolouration on the tooth enamel
tiredness, irritability or "brain fog"
slow growth, dropping down their growth curve, or late puberty
iron deficiency that keeps coming back
And here's the statistic that stays with me: up to 1 in 5 children picked up through screening had already seen a doctor about their symptoms, but were never tested.
For these children, a strict, lifelong gluten-free diet is the only treatment. And "strict" really does mean strict. Research shows that even trace amounts of gluten, under 50 mg a day (roughly a fiftieth of a slice of bread), can be enough to keep the gut lining inflamed. Up to 30-40% of people with coeliac disease still have symptoms or ongoing gut damage while believing they're fully gluten-free and the most common reason is accidental exposure: crumbs in a shared toaster, a wooden spoon used for regular pasta, or a "may contain" snack. Some children show no obvious symptoms when they're exposed, but the damage inside can still happen.
I know that can sound daunting at first. But the good news is genuinely good, because children's bodies are remarkably good at catching up. On a strict gluten-free diet, catch-up growth is usually expected within about 12 months and bone density improves too. Children diagnosed before puberty can still reach a normal peak bone mass, which protects their bones for life. Late puberty, which affects around 11-20% of children with untreated coeliac disease, usually gets going within 6-8 months of going gluten-free. And many parents tell me their child has more energy, fewer tummy aches and a noticeably brighter mood within weeks.
If you suspect gluten is a problem but there's no diagnosis yet (celiac)
A very important advice: Please don't remove gluten from your child's diet until they've been tested and a specialist has confirmed or ruled out coeliac disease.
The blood test for coeliac disease looks for antibodies (tissue transglutaminase, or tTG-IgA) that the body only produces while gluten is being eaten. If your child has already cut gluten out, the test can come back falsely negative. NICE guidelines advise eating gluten in more than one meal every day for at least six weeks before testing. Your doctor should also check total IgA at the same time, because some children naturally make very little IgA, which can hide a positive result.
For children, the European ESPGHAN 2020 guidelines allow a diagnosis without an endoscopy if the tTG-IgA level is at least 10 times the upper limit of normal and a second blood sample confirms it with a different antibody test (EMA). If the results are lower or don't line up, a biopsy is still needed. Going gluten-free first, then having to reintroduce gluten for weeks before testing, is something I see far too often, and it's tough on children and parents alike.
So, if you're worried, speak to your GP or paediatrician first and ask for coeliac testing.
What if the tests are negative but gluten still seems to be a trigger? (celiac)
Some children and adults react to gluten without having coeliac disease or a wheat allergy. This is called non-coeliac gluten sensitivity (NCGS). Because there's still no single test for it, estimates of how many people are affected range widely, from under 1% to 13%. Symptoms can include bloating, tummy pain, tiredness, headaches, brain fog, joint aches, skin flare-ups or mood changes and they may appear hours or even days after eating gluten, which makes them hard to pin down.
Interestingly, it isn't always the gluten. Wheat also contains fermentable carbohydrates called fructans (a type of FODMAP) and proteins called amylase-trypsin inhibitors (ATIs) and both can cause very similar symptoms. That's why many experts now prefer the term non-coeliac wheat sensitivity, and why the right plan for one child can look quite different from another's.
From a functional medicine perspective, NCGS is often linked to what's happening in the gut: increased intestinal permeability (sometimes called "leaky gut"), an imbalanced microbiome, small intestinal bacterial overgrowth (SIBO) or low-grade immune activation. Diagnosis follows a clear process known as the Salerno criteria. Coeliac disease and wheat allergy are ruled out first, symptoms are shown to improve on a gluten-free diet and then gluten is reintroduced, ideally "blind", so no one knows whether it's in the food, to confirm the reaction. The Institute for Functional Medicine describes NCGS as a complex diagnosis for exactly this reason.
For these children, the level of strictness needed is more individual. A carefully planned, time-limited elimination, ideally guided by a registered dietitian or nutritional therapy practitioner, helps you understand whether gluten is truly the trigger and what else might need support. In my clinic, we also look at gut health as a whole, because removing gluten is often only one piece of the puzzle.
Question 2: What can my child actually eat and will they still get all the nutrients they need?
When parents first look at the list of foods that contain gluten, it can feel like there's nothing left. Bread, pasta, cereal, crackers, birthday cake… the foods children seem to live on.
But here's the thing I always tell families: far more foods are naturally gluten-free than contain gluten. Fruit and vegetables, potatoes, rice, eggs, fish, meat, beans, lentils, plain dairy, nuts and seeds are all gluten-free in their natural state. So are grains and pseudo-grains like buckwheat, quinoa, millet, amaranth and teff (choose ones labelled gluten-free, as they can be cross-contaminated during processing).
The gluten-free aisle trap
The trickier part isn't what to remove. It's what to put in its place.
It's completely understandable to reach for gluten-free bread, pasta, biscuits and snacks when you're starting out. They make life easier and occasionally they're a lifesaver. But many packaged gluten-free products are highly processed. To recreate the texture that gluten normally provides, they often rely on refined starches, added sugars, gums and emulsifiers and they tend to be lower in fibre, protein and minerals than the foods they replace. A review of children's gluten-free products found that most were not nutritionally better than their regular equivalents and many were higher in sugar, salt or fat.
When these foods become everyday staples, a gluten-free diet can quietly become a low-fibre, low-nutrient one, which is the opposite of what a healing gut needs.
Nutrients to keep an eye on
Children with coeliac disease often start their gluten-free journey with nutrient gaps, because an inflamed gut can't absorb nutrients properly. These are the ones I check most often:
Iron - for energy, concentration and growth. Low iron that won't budge is one of the most common clues that leads to a diagnosis
Vitamin D - for bones, teeth and immunity. It can stay low even after months on a strict gluten-free diet, so it's worth rechecking
Vitamin B12 and folate - for energy, mood, healthy blood and cell growth
Zinc - for immunity, appetite, taste and repair of the gut lining
Magnesium - for sleep, muscles and a calm nervous system
Fibre - for regular bowel movements and a healthy, diverse microbiome
Guidelines recommend repeating blood tests around six months after diagnosis and then once a year, with reviews every 3-6 months for the first year or two. In my clinic, I like to look a little wider than the standard panel, because a child's nutrient status isn't only about what they eat. It's about what they absorb and what their body can actually use.
There's also a gut microbiome angle that rarely gets talked about. Children with untreated coeliac disease tend to have fewer of the beneficial Lactobacillus and Bifidobacterium bacteria and more potentially troublesome species such as E. coli. In a study following children at genetic risk, those who stayed healthy showed steadily increasing gut bacterial diversity over time. Wheat is actually a major source of prebiotic fibres (fructans) in most children's diets, so when it goes, those fibres need replacing on purpose: vegetables, fruit, beans and lentils, seeds, buckwheat, cooked-and-cooled potatoes and rice (rich in resistant starch) and plenty of colourful, polyphenol-rich plants. If a child's gut is very sensitive at the start, we build fibre up gradually rather than all at once.
Finally, keep an eye on weight. Packaged gluten-free foods are often more energy-dense than the foods they replace and unwanted weight gain after going gluten-free is increasingly recognised in children. Building meals around a palm-sized portion of protein, plenty of colourful vegetables, a complex carbohydrate and some healthy fats keeps energy, appetite and blood sugar steady.
Not sure what that looks like on a busy Tuesday night? That's exactly why we built a full week of meals into our guide.
See what a week of nourishing gluten-free family meals looks like
Our comprehensive Gluten-free guide includes a 7-day meal plan with simple breakfasts, lunches, dinners and snacks, plus the recipes and a ready-made shopping list. Download the free guide and meal plan
Question 3: Should the whole family go gluten-free?
This is probably the question I'm asked most often and the honest answer is: not necessarily, but there are some very good reasons to make a lot of your family meals gluten-free.
First, consider testing the rest of the family
Coeliac disease has a strong genetic link. Around 1 in 22 first-degree relatives (parents, brothers and sisters) of someone with coeliac disease also have it, compared with roughly 1 in 100 in the general population and many have no obvious symptoms. NICE guidelines recommend offering coeliac blood tests to all first-degree relatives. So before anyone else in the household changes their diet, speak to your GP about testing (and remember, everyone needs to be eating gluten when they're tested). If a sibling tests negative but develops symptoms later, it's worth testing again.
If no one else has coeliac disease
Family members who don't have coeliac disease, a wheat allergy or a gluten sensitivity don't need to avoid gluten for medical reasons and there's no evidence that going gluten-free prevents coeliac disease in siblings. So you don't need to buy expensive gluten-free bread for everyone.
That said, in practice, many families find a middle ground works beautifully:
Make shared meals naturally gluten-free: curries with rice, roast chicken and vegetables, stews, jacket potatoes, stir-fries with gluten-free tamari, fish with potatoes and greens. Nobody misses out and you only cook once.
Keep gluten foods for clearly separated moments: for example, other family members might have regular bread at breakfast, with its own toaster and spreads.
Protect your child's food: cross-contamination at home is one of the most common sources of accidental exposure. Separate toasters, labelled butter and spreads, clean boards and cooking gluten-free food first all make a real difference.
This approach helps your child feel included rather than different, which matters enormously for their confidence and their relationship with food. And many parents tell me that cooking more whole-food, gluten-free meals ended up being good for the whole family, simply because there was more variety, more vegetables and fewer ultra-processed foods on the table.
Setting up a safe family kitchen takes a little planning at the start, but it quickly becomes second nature.
Make your kitchen safe, without the stress
Our free guide includes a simple checklist for preventing cross-contamination at home, tips for eating out and travelling and the hidden sources of gluten parents most often miss (some are in places you'd never expect). Get your free Gluten-free guide
The functional medicine view: it's not only about removing gluten
Removing gluten is the essential first step, but in functional medicine sense in clinic, we see it as the beginning of the story, not the end.
When a child's gut has been inflamed, we want to help the whole body recover, not just the villi. In clinic, that usually means looking at:
Digestive function: stomach acid, bile flow and digestive enzymes all affect how well nutrients are absorbed
The gut microbiome: checking for imbalances or SIBO and rebuilding protective bacteria rather than simply wiping out the "bad" ones
Other food reactions: some children also react to dairy, or have a histamine sensitivity, which can keep symptoms going after gluten is gone
Nutrient status: testing, repleting and retesting, rather than guessing
Other autoimmune conditions: coeliac disease rarely travels alone. In one study of 529 children, almost 12% already had antibodies linked to another autoimmune condition at diagnosis, most often type 1 diabetes, so blood sugar and thyroid checks are an important part of follow-up
A cross-contamination audit: before blaming anything else, we check carefully for hidden gluten at home, at school and even in medications
Sleep and stress: the gut and nervous system are closely linked and both affect how well the gut heals
The Institute for Functional Medicine's 5R framework (Remove, Replace, Reinoculate, Repair and Rebalance) is one of the ways we bring all of this together into a step-by-step plan.
Every child is different, which is why a personalised plan often makes such a difference, especially in the first year after diagnosis. And if your child is still struggling despite being strictly gluten-free, please don't assume that's just how it will be. There is almost always more we can look at.
Where to start
If you've read this far, you're already doing a wonderful job. Here's what I'd suggest as your next step:
If you haven't had a diagnosis yet, speak to your GP about coeliac testing before changing your child's diet.
If your child has been diagnosed, ask for a referral to a registered dietetian or nutritional therapy practitioner and go to every follow-up appointment.
Download our free Gluten-free family guide to make the day-to-day part easier, from shopping and label reading to a full week of family meals.
And if you'd like support tailored to your child, I'd love to hear from you. You can book a free discovery call to talk through where you are and how we can help, or learn more about our children's and family nutrition programmes.
Looking for more, naturally gluten-free meals? Try our other recipes on our website.
Frequently asked questions
Q: Can my child be tested for coeliac disease if they're already gluten-free?
A: Testing is only accurate while gluten is being eaten. If your child has already stopped, speak to your GP or paediatrician, as they will usually need to reintroduce gluten for several weeks before testing.
Q: Do siblings of a child with coeliac disease need to be tested?
A: Coeliac disease runs in families, so first-degree relatives, including parents and siblings, are usually advised to be tested, even if they have no symptoms.
Q: Is a gluten-free diet healthier for children without coeliac disease?
A: Not automatically. A gluten-free diet built on whole foods can be very nourishing, but one built on processed gluten-free products can be lower in fibre and nutrients. Children without a medical reason to avoid gluten don't need to cut it out.
Q: Are oats gluten-free?
A: Oats don't contain gluten themselves, but they're often contaminated with wheat, barley or rye during growing and processing. Only oats labelled gluten-free are suitable for people with coeliac disease and a small number of people with coeliac disease also react to pure oats.
Q: My child is strictly gluten-free but still has symptoms. Why?
A: This is more common than you might think. Accidental gluten exposure is the most frequent cause, but lactose intolerance, other food reactions, SIBO, IBS-type gut sensitivity or a gut that simply hasn't finished healing can all play a part. A thorough review with your healthcare team, or a practitioner experienced in coeliac disease, can usually find the missing piece.
Please note: This article is for general information and education only and is not a substitute for medical advice. Please speak to your GP, paediatrician or dietitian before making changes to your child's diet.
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