Does My 2 Yr Old Son Have Celiac?

[frankiesmum]

Hi,

Newbie here...

My son, who'll be 2 at the end of March, has been ill with sickness & nasty nappies since the beginning of December last year, some days worse than others...our doctors & health visitor put it down to bugs going around again & again, but last week enough was enough & I insisted they investigate...

This is what I see as his symptoms...

Firstly..he's nearly 2 & doesn't walk..he's a bum shuffler..HV & Physio put it down to lazyness, even though I explained that he cried a lot when you stood him & when he was placed on his tummy.

He rocks his head & body furiously from side to side to go to sleep.

For the last 3+ months he has vomited (mostly at night in his cot) 2 or 3 times a week & his nappies have been either full of stodgy pale poo or tiny wet bits that he cries when he squeezes them out.

He went from being a happy, chilled little chappy to a whingebag.

..from a brilliant appetite to struggling to get him to eat anything.

Vomited on a couple of occasions when he's been given Barley water to drink at friends houses.

Vomited as a baby after weetabix.

He's small & skinny & sometimes his belly bloats in a 6 months pregnant type way.

Last Tuesday my doctor took a stool sample to eliminate various bugs & stuff but not to look for gluten intolerance.

It came back clear this morning so I'm taking him back in the morning.

Since last Tuesday, we have removed Gluten from his diet completely & now (apart from considering a 2nd mortgage to pay for it! lol) :-

He's happy

He's hungry

He's doing normal poos & no vomiting

He's active again

He's hardly rocking ( except during tantrums)

& he's interested in standing up & walking with us holding his hands...

Surely this isn't coincidence?

& what happens now..will they give him a blood test? then a biopsy?

I'm in the UK if that makes any difference..

Thanks for reading x

[Ursa Major]

You're right, the sudden change is hardly a coincidence. Unfortunately, if you want the blood work and the biopsy done, you'll have to put your son back on gluten, otherwise you'll get false negatives. On the other hand, blood work (and even the biopsies) are notoriously unreliable in young children under six (and not that reliable with anybody older than that, either), and you might end up with false negatives anyway. The diet trial is the most reliable test in a toddler.

It is quite obvious that your son reacts violently to gluten. You remove it, and he is a changed child. So, he is undoubtedly intolerant to gluten. It is your choice if you want the official testing done or not, no doctor can stop you from changing your child's diet, as long as you feed him what he needs (and nobody needs grains).

I hope he keeps improving.

[frankiesmum]

You're right, the sudden change is hardly a coincidence. Unfortunately, if you want the blood work and the biopsy done, you'll have to put your son back on gluten, otherwise you'll get false negatives. On the other hand, blood work (and even the biopsies) are notoriously unreliable in young children under six (and not that reliable with anybody older than that, either), and you might end up with false negatives anyway. The diet trial is the most reliable test in a toddler.

It is quite obvious that your son reacts violently to gluten. You remove it, and he is a changed child. So, he is undoubtedly intolerant to gluten. It is your choice if you want the official testing done or not, no doctor can stop you from changing your child's diet, as long as you feed him what he needs (and nobody needs grains).

I hope he keeps improving.

Wow, thanks for your quick reply!

Gawd, I really don't want to make him ill again, but on the other hand if we get him 'officially diagnosed' we will get his staples on prescription which would help a great deal..we're not poor but we're hardly comfortable either! Mmmm, have to think on that one..

We're lucky really..he's taken to the diet really well..he already loved fruit,vegetables,meat & fish..

Thanks again for taking time to reply..some of my family think I'm over-reacting..

I forgot to mention that I have Ichthyosis & he's showing signs of that on his legs too, & my mum ( who's 73 ) has decided to cut gluten from her diet for a couple of weeks as she's had problems with her stomach for years & also has osteoporosis, joint pain & thyroid something or other which I believe can be symptoms..?

[pugluver31902]

Now I can't speak for your son, and I certainly would never advise someone to make thier child sick, but as for my personal feelings, I think I would want to have an official diagnosis. When he is older and cant remember being sick, he may not show any symptoms if he were to cheat on his diet. I think personally I would want to know for sure if I was Celiac or just intolerant, so I would know if I was doing bodily damage if I cheated, or if it was just a phase I went through. If I was in school and watching other kids eat cookies and cakes, I would want to know for sure that I couldnt eat it. But thats my opinoin. Only you can decide whats best for him. Good luck! Either way, he definitly benefited from the diet, so even if the test came back negative you would probably keep him on the diet. BUT... False negatives are not uncommon. So yeah, guess my opinoin didnt help much. Lol, sorry!

[frankiesmum]

Me again,

We went back to the doctor this morning & even he noticed a big difference in Frankie..he reiterated the fact that the bloods & biopsy were unreliable at his age & gave a pre-diagnosis of a severe gluten intolerence very likely to be coeliac disease. He's given us prescriptions for the staples & referred Franks to a paediatrician...

I'm sat here in tears thinking about birthday parties & the like..bless him.

Thanks to both of you for your advice x

[Jestgar]

Wow, that's great!

And congrats to you for being able to figure it out so quickly!

[Ursa Major]

Wow, you've got an excellent doctor! Those are extremely rare, hold onto this one if you can!

I am glad you can get the food on prescription without getting all the testing done. You must be relieved that you won't have to put Frankie back on gluten.

I know, it is all very overwhelming at first. But many parents here have found it is well worth the trouble to have healthy children.

Birthday parties are manageable. If it is his birthday, bake a gluten-free cake, the other kids won't even know the difference. When he goes to somebody else's birthday, send a fancy cupcake with him. It isn't quite the same, but better than him getting sick.