I had a telephone consultation with the nurse on Friday about my sons Tummy problems. Bloated. Foul smelling stools. He is always telling me his tummy hurts, he wakes in the night crying about his tummy. We have kept a food diary - wheat based products do seem to be the culprit. He is also very tired and very pale which could be unrelated. He turned 3 in June. He isn't underweight or small but he's had slow growth for the past 18months.
The nurse told us to cut gluten from his diet for 3 months then come back if it doesn't help. I asked why I was cutting gluten and not wheat and he said it sounds like it could be coeliac disease. I asked if he need a blood test and he said there is no need at this age.
So that is a bit of a non diagnosis but if it helps explain my sons problems I'm willing to try. In fact.....he's not had gluten for 4 days and the past 2 nights he's slept without pain and he's been brighter during the day. Anyone else have a toddler avoiding gluten? Any advice?
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SarahMeMe
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Do you think it would make more sense to eliminate wheat first? Rather than all gluten? I think I might ring the health visitor for some advice and the nurse really wasn't helpful. He didn't really answer any of my questions.
No - the symptoms you describe, especially the smelly stools, sound so much like coeliac disease that he should avoid all gluten.
BUT - as others have said below, you need to insist on a blood test asap. It is not fair to get him feeling better and then make him eat what is making him I'll again for a test - if he gives up gluten now and then goes back on it he will feel even worse. You need to speak to your doctor and insist. Some doctors know more about this than others, so go prepared with some info from coeliac uk!
I’m sure the healthcare professional concerned was well-meaning, especially given the Covid situation at the moment; and to their credit they have raised the possibility of it being Coeliac Disease.
However if Coeliac Disease is suspected, gluten should never be removed from anyone’s diet (adult or child) before a Coeliac blood test has been done and all follow up tests have been concluded.
A lack of diagnosis could have such a profound impact on his long-term health and possibly even his schooling needs.
Future re-introduction (eg to get tested) would be so much worse and painful for him than getting it done now. The body often reacts much worse to re-introduction than if the person had stayed on it in the first place. Sadly too many people either try to go it alone, or get bad advice and end up in this predicament.
If you also want to check out the Coeliac NICE Guidelines for yourself, then googling NG20 should bring them up (It’s been awhile since I last looked at them properly, but I think there is a paediatric section somewhere in them).
Btw, I’m a Coeliac. I have also been a mentor for Coeliac UK (until my personal circumstances changed and I let my membership lapse several years ago).
I agree, you have been given awful advice! Your son needs a coeliac blood test before he cuts gluten from his diet.
If his antibodies are over 70, your doctor can diagnose coeliac on the blood test alone and he can remove gluten from his diet without a need for further confirmation.
I've heard of 16 week old babies being tested, so a 3yo can be too.
You can cut back on the amount of gluten in his diet until he's tested - adults would be told to eat gluten at least twice a day (e.g. 2 slices of toast for breakfast and gluten snack in the afternoon), so if you scaled that down to 3y.o. quantities (perhaps a slice of toast per day?) It might reduce his symptoms to a manageable level in the meantime.
Thank You. I'm so glad I posted here. I'll ring in the morning and get consultation with the GP. Then request bloodwork. Shall I remove this post do you think? I wouldn't want other to read it and do the same as me.
Don't worry about it, if people see your post, they'll also see the recommendations below that say not to do it
If the blood test comes back with a positive result less than 70, your son will need a gut biopsy to confirm the result - he should keep eating gluten until the biopsy, don't cut it out in the meantime (I have a feeling that's what your doctor might suggest given above advice).
Thank You so much. I just want to help him with whatever he is dealing with. You just trust you are getting the correct advice from the medical professionals.
If you receive test results for him, it’s a good idea to ask for the actual numbers (with the Positive/Negative ranges) - so that you can get a feel of how good/bad his situation potentially is.
Diagnosis can be a slow process, as there are often several stages to overcome. Don’t be too surprised if you sometimes find this emotionally challenging - just stay focused on getting the answers for him. Also be willing to consider travelling to hospitals further field - it speeded things up for me considerably. A two hour car/bus/train journey might be preferable to watching him suffer for an extra three weeks! Ask the questions. x
I appreciate people are saying the nurse is 'well-meaning' in her advice, but she is not. She is giving a diagnosis over the phone for a medical condition that needs to be diagnosed by a doctor. In addition, she is giving entirely erroneous advice in terms of it 'sounds like coeliac' and then advising gluten exclusion. Your child needs to be tested/diagnosed by GP/consultant and gluten must not be excluded until that has happened. This is not 'well-meaning' - it is a person who has some knowledge of coeliac but has underestimated the nature of the condition and the channels for diagnosing the condition. Astoundingly poor advice and 100% unprofessional. No medical condition diagnosis, particularly a serious autoimmune condition like coeliac, should ever be given over the phone, and certainly not without proper medical testing. I would report this/get back to the nurse and raise issue on this. Put gluten back in your childs diet asap, contact GP asap and get coeliac blood test booked and consultant referral made.
I’m going follow your message about phone consultation because this is some thing the health secretary wants to introduce permanently. I disagree because as you rightly pointed out , the child was not correctly advised by Nurse and should receive blood test. No if or buts to try to cut money or doctor consultation by half.
Phone consultations have a place if someone is already diagnosed with condition and just needing follow up advice. No diagnosis can be done by phone. Crazy.
I agree with this. I’m concerned this is what the government are going to push for, unless it’s crucial then you can see a gp. No sense to it. However video calls will be added to the system so this is something that is not a bad idea, because visually the gp could see you? But this is depending on what the diagnosis is? Yes, no sense in it really.
Doctors have been doing routine vaccinations and blood tests where the person's health is suffering meantime (so coeliac should hopefully be tested). I think they had to do a TV advert to remind people it's ok to bother their GP if they need help just now, because too many were trying not to be a burden.
Update - I rang this morning and he has already had a test. We are a small village surgery, which is probably why we were seen straight away. I did have to wear a mask but not my 2 kids. She did comment on his paleness (he has very white skin) and has run additional tests.
She did indicate that this particular test may take longer than a few days but they will be in touch with the results once they have all returned. Had also recommended allergy testing if these results come back normal. She was very friendly and seemed more experienced.
P.s We have access to medical records via the website, so I can see the results as they come through - so I will be able to see specific numbers.
Still not really sure I follow you. My understanding is that routine blood tests (e.g. annual thyroid tests) may be delayed (if the patient feels well), but that they would test for things e.g. in the case of this child or if you had anemia symptoms for example.
Are you meaning if the test comes back negative? If that's the case, then trialling the child on a gluten free diet would still be a good idea (many suffer non coeliac wheat sensitivity), but knowing whether or not it's due to coeliac is an important thing to know. A negative test result is still a positive step forward.
People have suffered by staying away though, which is why they had to start advertising to let people know they should still come in. There were many reports of people delaying getting cancerous lumps checked out and even some ignoring mild stroke/heart attack symptoms, later dying because they hadn't sought treatment soon enough.
Well since getting his blood test, I've continued to give him gluten again. Just like that.....wakes in the night screaming about his tummy. He doesn't eat bread/pasta/cake anyway, he's more of a meat/veg/dairy lover. So it's just the hidden added gluten I hid for those few days.
I don't want his test to come back positive, this is going to be a long wait.
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