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2 year old been recommended a gluten free diet

HarryBoe
HarryBoe

My 2yr 6 month year old has been having problems for a year now. Bloating being the biggie, one minute he has a flat tummy and the next he looks pregnant. He tells me it hurts. He’s ready for potty training but I’m too scared to try because he’s having about 3 loose (not diarrhoea) stools a day. They stink, seem a bit mucousy. I’m not usually bothered by smells but sometimes we need fresh air as they are so strong. I initially thought it was due to him licking things (wood/stones/fabric) that it was more of a bacterial thing. Finally a rash that looks like bumpy eczema in small patches but mainly on his back.

I took him to get weighed and he hadn’t gained in a year. The health visitor commented on his paleness, although I would say he is naturally pale, blonde, blue eyes, ginger dad. So we started keeping a food diary. Dairy seemed to be the problem. So we cut dairy out and saw massive improvements in his skin but no change anywhere else.

I took him to the GP and ended up seeing the nurse. Due to his lack of weight gain he got referred to the NHS dietician. We went through his daily foods, let her see his food diary and she recommended we try cutting gluten from his diet. She made another appointment for us to discuss cutting out gluten and give us some recommendations.

1 day later - Coronavirus lockdown. So our appointment was cancelled and we got a phone appointment booked. He’s had no blood tests, hasn’t seen a dr or been examined. I’m confused.

Why would he be recommended a gluten free diet. It could be ibs? Or similar?

Has anyone had experience with young children being advised to cut gluten?

35 Replies
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My daughter was around the same age when she was put on a GF diet for a while although she was eventually taken of it. Her pooh had a distinctive smell to it and was an unusual colour most of the time, quite grey looking. She had tummy problems quite early on and was bloated and in pain a lot of the time. I do remember the paediatrician saying she was unlikely to be Coeliac as she had chubby legs!

This was about 33 years ago and nothing was really explained to us. Even now she struggles with gluten but has had negative blood tests and no GP has suggested an endoscopy (even though I am Coeliac) because of the negative blood tests.

There was very little in the way of GF food 33 years ago, so hopefully you will find it a lot easier and get more info these days. Sending you best wishes and good luck.

HarryBoe
HarryBoe
in reply to Sapphire10

Thank You for your response. Very odd about the chubby legs remark, I wonder what that means. My little boy had glorious chubby legs until recently, now he’s a healthy kind of lean.

I think I’ll manage cutting out gluten, it’s just confusing me what made the dietician come to that decision. We will find out if it works soon enough.....

A negative result just means they have failed to get a positive result. I am coeliac and have chubby legs too. Keep safe

I’m a diagnosed Coeliac - so have been living a gluten-free life for a few years now; but I don’t have much experience with getting a possible diagnosis for a young child.

However I have been through the investigation process. It should start (in most cases) with serological testing. Did your healthcare professionals suggest doing a Coeliac blood test for your son?

If not, I would be reluctant to recommend removing gluten from the diet until this test has been done. Reintroducing gluten retrospectively is a nightmare - the symptoms are often worse than before.

In my opinion, you definitely do need to find out if he’s positive for coeliac disease, because it will affect his long-term care - including pastoral care at school.

The Nice guidelines on Coeliac disease are known as NG 20. They take a little while to read through, but they may provide you with some insights on the best course of action for your son.

Just as an aside, I was dairy intolerant as a four-year-old and “grew out of it”. Except I didn’t - I was dairy intolerant because of the damage coeliac disease was doing to my guts. Unfortunately it took me another 33 + years to figure this out!

I also had really stinky poo as a kid; as well as always being a pale and skinny child.

Dealing with COVID-19 and an unwell youngster must be really tricky. It’s a dilemma is whether to risk going out - maybe your GP could offer some advice over the phone?

Best of luck figuring things out.

By the way, I’m not related at all to Sapphire10!

Just seen the similarities too 😄. I can confirm we are not related!

HarryBoe
HarryBoe
in reply to Regalbirdy

Well I’m 33....so that’s a lot of 33s mentioned in this post 😝

HarryBoe
HarryBoe
in reply to Regalbirdy

Thank You so much. I think I need to do more reading. No one has recommended blood tests. I’ve just been following what the NHS have recommending I do and hoping they know what they are talking about. I’ll knowledge up and then get a GP appointment to recommend a blood test.

Regalbirdy
Regalbirdy
in reply to HarryBoe

Hi,

They may be reluctant to test because of his age. Or it could be general ignorance on their part (believe it or not this is unfortunately still happens). Or it could be because due to the current difficulties with the COVID-19 virus.

Also bear it in mind that he could be gluten sensitive but not actually be a Coeliac. Coeliac Disease is just one type of gluten sensitivity. Once any testing is completed, you are free to do as you wish with his diet. x

HarryBoe
HarryBoe
in reply to Regalbirdy

I never even considered gluten/coeliac. He does naturally avoid food containing gluten, bread/pasta/biscuits etc. He obviously still eats gluten in a lot of foods. I just assumed it was more of an ibs thing.

I was just confused why the dietician came to that conclusion with limited information. I looked through the food diary myself and didn’t see a pattern. It is just constant symptoms each day regardless of what he ate.

They really should run a coeliac test on him before recommending cutting out gluten. Once a coeliac cuts out gluten, it causes far more problems to bring it back in again to be tested at a later stage, so it's best to get tested upfront.

Would your GP be willing to do the blood test just now do you think? Could be worth calling.

I've heard of 16 week olds having to cut out gluten, so being diagnosed at his age isn't unheard of.

HarryBoe
HarryBoe
in reply to Cooper27

I’ll give them a ring. I’m not convinced it is gluten but it might be a good idea to be tested to rule it out. I’ll have to see what they say regarding time frame.

Never heard of 16 week olds cutting gluten before, actually children start eating at 6 months, so that must be if gluten is in medicines and such perhaps.

Thanks for your help, I’ve been on google and it does seem like a blood test is a good idea.

Cooper27
Cooper27
in reply to HarryBoe

It's not common for 16 week olds to be diagnosed with coeliac disease, but it does happen. You don't just have to eat gluten to consume it - it can be in drinks or come from cross-contamination. I've seen friends babies be introduced to some food groups from around 4 months. They said recently that introducing things before 6 months reduces risk of food allergies.

HarryBoe
HarryBoe
in reply to Cooper27

Thanks. We have a phone appointment with the GP now, so I will ask for a blood test and hopefully we can rule that out.

They are always changing guidance for weaning. We was told we could offer fruit and veg before 6 months if needed, gluten and dairy (obviously not breast milk/formula) to be introduced after 6 months.

A baby can get gluten from breast milk if the mother does not have gluten problems but the father has. Take care

Dgtheel
Dgtheel
in reply to HarryBoe

The gluten could be in breastmilk from mom or formula.

My Aunt almost died as a baby and was later diagnosed with coeliac when it was ‘discovered’. She didn’t walk until she was three years old. So clearly it can affect the very young. I absolutely agree with others not to cut out gluten unless blood tested first.

I also have coeliac and once I was diagnosed and gave up gluten, there is no way I could have eaten it again as my immune system became far more sensitive to even tiny degrees of contamination. There’s a long history of people being told to eat gluten again for test purposes once their bodies have proven that they can’t tolerate it. I’m afraid ignorance among health professionals is a huge thing and I was given very bad advice by a hospital dietician, for instance.

There are blood tests (finger scratch ones, I think) for coeliac antibodies that you can buy online but you would need to research how good they are and whether it’s a good idea to do it on a toddler. But it would be so good to get an antibody test because sometimes it’s a sky-high reading and pretty much beyond doubt that it is coeliac.

Best of luck and I hope he doesn’t have CD.

HarryBoe
HarryBoe
in reply to Hil101

Thank You so much. A pattern in these replies. Get a blood test. I’ve got a telephone appointment with GP on Thursday. So we’ll see what is suggested, we live across the road from the GP surgery. They’ve been making people wait outside and letting them in one at a time through a side door.

My granddaughter was just over 2 when she developed very loose bowels. Dr suggested cutting out dairy (sisters had been sensitive) but that didn’t help. She then had a blood test to rule out coeliac (negative) so we luckily stocked up on gluten free stuff just before the shelves were cleared! That has sorted her out so it may be an easy fix for you too. Maybe you’ll get further investigations when things go back to ‘normal’. Interesting they are both similar ages - not sure why it should become a problem now. 🤷‍♀️

HarryBoe
HarryBoe
in reply to Sybilw

My son was very poorly a year ago, he was in hospital for a week and had a lot of antibiotics. His problems started then but it may not even be connected. Would you say your granddaughter has a gluten intolerance then? Rather than coeliac? Did she get any help cutting gluten? Or was it just a decision her parents made that did make a big difference.

My daughter was having similar issues, bloated and painful stomach and she would naturally choose not to eat bread at a young age. After a few episodes of pneumonia (age 4) and feeling very tired all the time (she was not a ‘normal’ 4 year old - no energy and would not run, jump or do anything energetic), along with persistent stomach pain, limb pain, pale with dark rings under her eyes, she was finally diagnosed with coeliac disease (following an upper endoscopy). It was not easy getting this diagnosis and I had to fight all the way and when i mean fight, I mean calling hospitals, doctors, specialists, health advisors EVERY day to get something done as I knew there was something very wrong. I was treated on occasion as a neurotic mum and was even asked what would make me feel better!!! One specialist advised she definitely did not have coeliac disease because she was not anaemic.... although he rang me back a week later to apologise! I remember it being a very stressful, emotional time. But once being on a strict gluten free diet my daughter changed within one week!! It was that quick and she became happy, active (taking up lots of sport at school for the first time) and best of all, no more pain!!! Also, dairy was initially a problem for my daughter, but when she was gluten free , she could tolerate dairy. I know my daughter had coeliac disease from birth and it took 4 years for it to become a real issue. I would definitely recommend an upper endoscopy (after the covid-19 pandemic) to confirm if it is coeliac disease - but unfortunately you do have to keep your child eating gluten otherwise you’ll receive a false negative. Since my daughters diagnosis I have been tested and confirmed to have coeliac disease (although I do not have any symptoms).

I do feel for you, it’s a difficult decision to make during these uncertain times, but your body does not need gluten in your diet to be healthy - so if your child is less bloated on a gf and possibly dairy free diet, then I would follow this until the world returns back to normal. But obviously speak to your Doctor first.

HarryBoe
HarryBoe
in reply to Flay

Thank You so much for your response. I’m sorry you and your daughter had to deal with all that stress and your daughter probably pain as well. You got there in the end but it shouldn’t have been such a struggle.

I was eventually tested at the age of 70 after a life time of skin problems, I was only tested because my son was found to be coeliac.

The GP said they don’t do a blood test until he is 3 as it isn’t reliable and to continue giving him gluten until he’s 3.

Also doesn’t recommended him getting a blood test for anaemia during the pandemic.

Now I’m lost.

Regalbirdy
Regalbirdy
in reply to HarryBoe

Hi HarryBoe,

You could always try talking to coeliac UK about testing ages – they have an advice line (or at least they did until Covid-19!).

In the short term it may help him if you consider supplementing his diet with a child’s daily multivitamin - to minimise the risk of possible malnutrition issues.

All you can do is your best...

HarryBoe
HarryBoe
in reply to Regalbirdy

Thank You. I have just checked the website, very useful.

My blood tests showed nothing. It was an endoscopy that confirmed for me. But also chubby legs means nothing surely? That’s quite bizarre.

HarryBoe
HarryBoe
in reply to CloTee

All babies have chubby legs for a while right?! I’ve got tall lean kids, with or without coeliac their legs would be thin because genetics and height.

Hi, we had the same problems with my daughter. Started when she was 18months, randomly vomiting, poor weight gain, bloating, sore tummy, loose poo, lethargic. After countless gp visits we eventually got a referral to paediatric doctor who suggested removing dairy. This stopped the vomiting but other symptoms remained. We decided to remove gluten which really helped.

At the same time, we went back to the gp and got a different referral. They agreed to do relevant blood tests for food allergies. We had to put her back on dairy and gluten which was hard but right thing to get true test results.

She had the first Blood test just before she turned three. Came back positive for coeliac. She then had another blood test a few months later to test the gene link and came back positive. Given this and positive response with removing gluten from her diet she was medically diagnosed as coeliac. She is a normal toddler again! Just keep on it with the doctors despite covid-19. Coeliac is a serious condition and has many implications if not spotted. Age was not an issue, never mentioned, the problem was getting gp to take it seriously then appointments with experts followed by returning to normal diet before first test.

I hope this helps. We also potty trained her early as couldn’t deal with the nappies!

HarryBoe
HarryBoe
in reply to Jamai

Thank You. This is reassuring. I’ve done a food diary this past week. I purposely didn’t give him gluten for 2 days as an experiment and his bloating did completely disappear, also he just seems more ‘with it’ so there might be something in it. I’m still giving him gluten until we get some sort of test. The GP says he is too young for a coeliac blood test (2 and a half) I’m waiting for a call back from the health visitor for advice.

HarryBoe
HarryBoe
in reply to HarryBoe

I’m sorry your little girl has coeliac. I imagine it was a lot to take in at the time.

Jamai
Jamai
in reply to HarryBoe

Thank you and good luck! Just keep pursuing the gps etc until they take the action needed.

Hi. I'm not sure what testing standards are for children, but general criteria for coeliac is keep gluten in the diet until tested for coeliac, otherwise you can't test when gluten removed as damage is fixing/antibodies change for the blood test. Did the nurse suggest coeliac or just that you remove gluten?

I’ve sent you a PM

I managed to get him a test. It was positive and he has a diagnosis without a biopsy. I’m a bit upset for him but glad we can move forward and get him better. I’ve not heard anything about what comes next.

Thanks for the help everyone.

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