Six-year-old constantly exhausted with tummy pain and poor growth

[Lcw29]

I've got a gut feeling something isn't right.
My son is 6 . He's exhausted all the time. He falls asleep in the car and asks to close his eyes to rest. He gets leg pains alot especially at night. He's emotional all the time because of tiredness.

He's behind in school and I'm sure it's down to fatigue. He's not growing as he should as the doctor has said he's not pur on weight in a year or grown much in height.

Bloods showed low ferritin but he's been on iron for a month and no change. Also had low ALP which they said could be low zinc but we're trying everything and no success.

Constantly complaining of tummy pain and yesterday was crying in pain then had awful diarrhea. He has lymph nodes visible in neck all the time.

The last week he's developed what seems to be an eye tic. Rapidly blinking both eyes and says they hurt. Doctor couldn't find anything but said if he developed a headache to go to a@e.

He's under ent for possible enlarged adenoids but not going until may for an appointment.

What would you do?

I feel I'm not getting anywhere with doctors but know that this is not right. A 6 year old should not be asking to rest!

I would go back to the GP and ask for a cal protectin test to be done. This is a stool sample to check for levels of inflammation.

My son was the same age when he developed similar symptoms which were dismissed by the doctor. He was eventually diagnosed with crohns disease when he was 8.

Coeliac/crohns I would ask for these tests

A friend’s daughter was quite similar - eventually diagnosed as coeliac

As soon as I saw your title I thought ‘ferritin’.

It can take 3 months of treatment before levels improve enough to feel much of a difference.
What else did they check? Check they also tested for B12/folate and vitamin D.
They should be rechecking his ferritin after 3 months of treatment so you can ask for them to be added then.

def get tested for coeliac!

Interesting. He's had a coeliac test done which was normal but will ask about chrohns. I hate seeing him like this

Very good advice. I’d also be asking for him to be tested for Coeliac Disease.

A few of his symptoms could be associated with being ND though. My DD had “tummy pains” at that age which were later diagnosed as anxiety. The tics are often seen in ND DC too and low ferritin is often associated with ADHD.

Being ND wouldn’t explain the diarrhoea or the tiredness but I just wanted to say there could be other reasons for some of his symptoms

Sorry cross posted with you there. I see Coeliac Disease has already been ruled out

Yeah they checked all of that and was ok . I didn't realize it took awhile. Thank you .

I would try cutting out gluten for a short period despite the coeliac test. Keep being the squeaky wheel at the GP. This doesn't sound right.

Just to add, they should be checking for cause. If his diets good then yes, possible coeliac. They can add a blood test for this too but would need

Totally agree with just going back to the GO over and over. Have they said anything about his lack of growth? Have you asked for a referral to an endocrinologist?

Has he had other blood tests, OP? Also even though he has had a negative celiac test result he could still have celiac disease or just be gluten intolerant. Seronegative celiac disease is rare but people can have it where they test negative for standard blood antibodies (have a negative result on a celiac test). They test negative on the standard celiac test but still have gluten induced symptoms and experience intestinal damage causing toilet issues. I hope he feels better soon 💐

That's interesting. Maybe I should try cutting things out to see. Would be hard as he loves bread and gluten free is not the same lol I eat gf bread but not coeliac.

He's had full blood count.

It can also be other allergies - lactose/dairy, soya, etc. my gd is even symptomatic on cocoa!

Obviously something going on though, I would press for a specialist if you haven’t already.

Sorry GP not GO 🤦‍♀️

Some shops do a really lovely tiger loaf that is gluten free. Tastes similar to a normal tiger loaf. Also one more thing: sometimes lactose intolerance goes hand in hand with gluten intolerance. Just something for you to think about if you decide to eliminate foods and keep a food diary. 💐

The blood tests for coeliac disease can come back with false negatives. I've two relatives both now diagnosed coeliac and neither came back positive on the blood test.

Absolutely do not cut gluten out though until has been for further testing. This has coeliac disease written all over it.

What's the reason you are already gluten free if not diagnosed? Coeliac disease is hereditary....

Sorry, this site is so slow and glitchy for me today! I see he’s been tested.
I hope he feels better soon, but yes, it can take a while for ferritin levels to increase.

Do check his levels for the other tests against the labs reference ranges. You can still suffer symptoms in the low range of normal for things like b12/Vit D etc so, if they are low end of the reference range, it wouldn’t hurt to boost them.

Hi OP, I’m in a similar position to you. My 6 year old has some of the same symptoms - sore legs at night, often a sore stomach, growing slowly (although your little one seems like they have more acute symptoms). Whatever it is I haven’t got to the bottom of it either. I was 100% it was celiac but the test came back negative too. We are trialling a gluten free diet for her anyway.

What struck me about your post is that you eat gluten free bread too. Do you also have gluten issues? As I definitely do despite testing negative myself for celiac a couple of times. I’m sure there’s something going on there but still working on figuring things out…

My son had similar symptoms. He was finally diagnosed with Eosinophilic esophagitis.

Yes, leg pains are also extremely common in kids with Ehlers Danlos syndrome or mild connective tissue disorder which overlap heavily with ASD/ADHD. I had leg pains, tummy aches and blinking tics as a child and it was all ND. The tummy ache was anxiety which only manifested as identifiable anxiety and panic attacks after puberty. The blinking must have been a type of OCD or stimming. I went through phases of repetitive movements with my eyes or mouth but did grow out of it and never got the urge to do those as an adult. I also had low ferritin as a child as remember being forced to take some awful tasting syrup with iron.

I think the bigger picture is important. If it's an otherwise healthy child who clearly fell ill over a short time then it could be physical. If the child fits many other criteria for ND and seems to be high-masking then it might be worth looking into. It could also be combination of both, with an underlying physical issue (gluten intolerance, Ehler Danlos) on top of ND symptoms.

Thanks for all your input. It's really appreciated.

I get a really bad tummy with gluten. I tested negative for coeliac but eliminated it anyway. I didn't develop it until my 20's.

Interesting as my oldest is autistic and ADHD but presents very differently so didn't consider this.

Urinary incontinence/ leakage has been a huge issue too.

Hi OP. My DD (11) has similar symptoms and my GP thinks low iron is possibly the cause. She had a blood test this week and we're waiting on the results. Just wondering how long it took you to get the results of your son's blood test?