Coeliac - celiac 4 year old - symptoms?

[Itsmee12329]

Hi, my son has been suffering with vomiting for a long time & sore tummy’s. It’s became a big problem for us as it’s becoming more & more frequent. The vomiting is the worst & absolutely floors him, he goes extremely pale, brings up a lot of green/orange bile. He also passes a lot of gas, and we would regard him as a ‘lazy’ child as he’s always lounging around, but he’s always been this way.
He is only 4 and just started school. He has always been a ‘vomity’ child, but it seems to have gotten a lot worse this past 6 months or so & he’s being sent home from school almost weekly with vomiting with no obvious trigger noticed by teacher. We ourselves have found it extremely difficult identifying a trigger as the vomiting happens at different times, in school, at home, in the car, out playing in the garden. We haven’t been able to identify any cause ourselves.
GP suggested allergies a while back, we sat down with GP and went through things he ate at home & at school etc. we came up with 1 possibility, fish. So his school stopped serving him that at lunch and we didn’t cook it at home either. GP recommended trailing this for 1 month but there wasn’t even a small improvement, several days sent home from school with vomiting, tummy pain & headache.
he also had a milk allergy as a baby but his symptoms where very different then to what he’s experiencing now. GP doesn’t feel it is an allergy/intolerance either.
We’ve only found out recently some of the things with our son are symptoms of celiac disease. Our GP feels this is a strong possibility & has sent through an urgent referral to gastro and the hospital said he should be seen within 3 weeks.
what where your child’s symptoms? Does these symptoms seem in line with celiac disease?

Have u had bloods done? Easy bloodiest for coeliacs. Yes my dd was 4 when diagnosed abd ds 8, sounds likely. Just need a quick blood test at Dr. If positive they send the sample for a second, then refer to gastroenterology. Vomiting,diarrhea, constipation are amongst main symptons- have a look at coeliacs uk.

My DD has Coeliac disease. She had very few gastro symptoms. Her main issues were joint pains, hair loss, breathlessness, headaches and pins and needles due to a severe lack of iron. She could barely walk 50 yards without needing a rest and getting out of breath.
She was actually being investigated for arthritis when an astute GP noticed the lack of iron and did a blood test for Coeliac disease.

Yes it does sound like a possibility for your son. vomiting, stomach pains, tiredness/fatigue, headaches. What are his bowels like? Some GP's are reluctant to do bloods in the surgery for very little ones and prefer them done at the hospital so hopefully the referral is quick. Don't change his diet until the results all come back.

My DS was diagnosed with coeliacs in sept 2024 so this is all new to us too.

Hello.

My son suffered awful bloating, v bad upset stomach (would often come on suddenly) and wind at age 4 too. We kept a food diary and could see that it was linked to eating bread/pasta.

He tested negative on a coeliac blood test.

Once we got those results (even though the test was negative), we chose to put him on a gluten free diet as a trial. All of the gut issues stopped. It’s possible to have non coeliac gluten sensitivity (as I understand it). Anyway, after 3-4 years of that diet, we reintroduced gluten without any issues.

Just worth bearing that in mind too.

It could be FPIES. Keeping a food diary is really important. Remember it can take 3-4 days to see a reaction if there is a non-ige allergy so something he eats on Monday could cause him to vomit on Wednesday.

My daughter was diagnosed with coeliac disease at 4. Her symptoms was stomach aches and horrendous smelling farts, and when I look back at pictures from that time I see she was also really bloated too, though I put it down to toddler tum at the time.
Symptoms can vary wildly. Is there anyone with coeliac disease in your family? As its genetic so if there is then the likelihood increases.

Thank you all so much for your replies. We are absolutely clueless about coeliac and came as a bit of a surprise as we actually hadn’t heard of it before.

Our son seems to have gotten a lot worse over the past 6 months, it’s really awful to watch. We actually always joked about him that he could pretty much pass gas on queue. He’s extremely gassy, his stools would be incredibly large if I’m honest sorry for oversharing, but he would struggle cleaning himself - he is only 4 - but it’s at lot of the time they’re very loose & could cause quite the mess so he does find it hard cleaning himself up after going.

our GP has put him on for Rapid response with paediatric gastroenterology at the hospital, I spoke with the hospital and they said they will see him within 3 weeks. It’s interfering terribly with his school, and his poor teacher is always having to clean vomit.

I think me & his dad haven’t been on the ball as much as we could have been, but he definitely has gotten a lot worse this past 6 months. As a baby & toddler he had an incredibly large tummy and was actually quite heavy for his age from birth, but recently he’s lost a lot of weight which is another concern. Family that haven’t seen him for a while have made comments about him looking a lot thinner, and I no children gain weight & grow and it can make them look slimmer, but the doctor weighed him at the start of December and again a week ago and he’s lost a few lbs in such a short time.

it’s became a worry for us, he would also seem very temperamental at times & over silly things, and this is something new. Usually He’s a laid back, ‘lazy’ child, usually easy going and very chilled. He would sleep standing up. Again this could just be down to him actually just being a laid back child, but our GP did advise this can be a sign of coeliac disease.

the GP didn’t want to carry out blood tests in the surgery as last time my son had his vaccines he almost fainted and had to get the nurse lol! God love him, he’s not the most brave wee thing and I’m absolutely dreading the hospital appointments but I no paediatrics will be the best for keeping things calm and upbeat for him. Our GP said the paediatrician would have a smaller needle for taking bloods too in comparison to what they’d have at the GP surgery xx

My daughters main symptoms were joint pain, tiredness, mild constipation and headaches. Much like another person upthread, she was originally investigated for arthritis. Rheumatology were a bit baffled by her symptoms and actually tried to discharge us without answers. I pleaded with them on account of the fact that she couldn’t even use her hands to get her own socks on and they did a coeliac test out of desperation (‘well, it looks like your GP forgot to do coeliac bloods. There is a small chance it could be that but it’s very unlikely’).

The Gastro symptoms come later, while awaiting a confirmatory endoscopy. She just started vommiting one day and pretty much vommited every day for five months. What helped was getting a prescription for an antiemetic (have you specifically asked the gp about getting one?) after we presented to A&E with vomiting induced dehydration, having thrown up everything she had eaten and drank for a fortnight and missing umpteen weeks of school!

If you have a spare £50 you can get a finger prick test from Selph for coeliac bloods - they do under 18’s and are extremely quick with results.

How long has your daughter been gluten free for and how long did it take for her symptoms to improve? My ds has been GF since sept and while things have improved, he's still experiencing milder symptoms.

Diagnosed about 16 months ago. Bit of a complex answer in terms is symptom improvement. Initially she was advised to give up gluten and gluten free oats and with this treatment her symptoms improved within days and went away entirely within 3 months. A year later she was advised to add in gf oats again as a trial and her joint pain and nausea made a comeback so she has just cut out oats again a few weeks ago - symptoms improved slightly.

Sorry to jump onto this thread. But wondering if anyone could anyone help me with the diagnosis of coeliac and how long this may take? My 2.5 year old twins have both had a positive blood test for coeliac (done through GP). So GP referred them to gastroenterology which they have appointments for but in Sept.

One twin is now loosing weight so spoke to her paediatrician (seen because of possible migraines and vomitting prior to coeliac testing) and he said she shouldn't of been referred on until had 2 x positive blood tests. The second blood tests are now booked for 31/01 for both.

But waiting till Sept for any further assessment seems such a long time. Especially for one of them who is having significant symptoms- vomitting, loose stools, has a continuous temp, headaches and pains and now loosing weight. Other twin is less affected with just loose stools and anemia.

I see on this thread there is a rapid response referral. What is the criteria for this does anyone know?

My son had two positive blood tests and was diagnosed by the paediatric consultant based on that. Her existing paediatrician should be able to diagnose her IF her figures are high enough, if they're not 10x the upper limit they will require an endoscopy to diagnose. However you can refuse this and start your DC on a gluten free diet after the 2nd blood test to stop their suffering. The only thing is you will either have to refuse the endoscopy or reintroduce gluten 6wks before it.

@FloralGums hope this is ok to ask-what was the hair loss like in your dc? Was it general or were there bald spots/patches? Thanks

Hey @Donimo sorry for the late reply. My son got rapid response referral because he was vomiting so often, he just started school and was missing so much as his school have a policy that if a child vomits they have to be kept off for 48hrs, we new he didn’t have a hug as we have never caught this vomiting from him, we have a little 1 year old daughter and even as a new born she never caught any of his vomiting - this is kinda when we realised the problem was with him and not a bug or virus.

He had been sent home from school 16 times in 4 months, plus sickness at home. The GP’s concern was because he wasn’t just vomiting uo the food he ate he continued vomiting for hours after and it was just green/orange bile. It was accompanied by headaches, being very pale, sweaty, very sore tummy and then he began losing weight as the sickness happens quite often. We actually had our first appointment on the day of the storm (end January) and unfortunately it was 9am in the morning during the red alert so the hospital had to cancel & rearrange for the end of feb / just a another 2 weeks from now.

if i were you i would get on to the GP and not take no for an answer, thankfully our GP was extremely helpful and he made the referral without us having to ask. I didn’t really no what celiac disease was until the GP mentioned it and then I did a bit of research, it’s a lot more common than I realised. They did make us try ruling out certain foods to begin with and it did take quite a few visits to the GP before he sent off the rapid response referral. We hadn’t even considering it being anything like celiac, we ourselves thought it was possibly an allergy as he had a milk allergy as a baby.

how are you getting on? Have you heard anything from you GP or anything?x

@Itsmee12329 thank you for your reply. I hope you get somewhere at his appointment.

One of the twins vomits often and no-one else gets ill. She even sleeps in the same bed as her twin and she never vomits so like your son it isn't a bug. Although nursery are great and she doesn't have to be off for 48 hours as our GP has written to explain. They also now don't send her home when she has a temperature as she constantly runs a mild temperature.

We only got the results of the second blood tests back yesterday and the results are still raised but the GP receptionist wouldn't tell me the exact results! I emailed my daughters paediatrician with these results yesterday asking for a telephone call- however she has an appointment end of March so I think they will say to wait till then.

I have spoken to the gastrointestinal consultant's secretary and she advised if I get the GP to email her these next blood results along with the fact she is loosing weight. Then they may bring the appointment forward.

I've been back and forth to the GP basically since the twins were born. Initially treated as reflux. Then CMPA- which definitely made a difference removing dairy- the twins dietician told me during their review that coeliacs can often be lactose intolerant too. Then toddler diarrhoea so reduced fibre and fruit intake. Then admitted for query brain tumor (due to vomitting and headaches). So feel like we are going round in circles. Both girls have a different paediatricians. They both have a dietician. One is under a specialist neurology and autoimmune clinic. Now waiting for gastrointestinal!

Let me know how the appointment in 2 weeks goes. I would like to know what they do. Thank you

Hello, Did you ever find out the reason? How is your son now? Having the same problem with my grandson