Short statue / Asymptomatic Celiac disease?

[Ippagoggy]

My 3.5 year old son is below the 0.4 percentile and far below his mid-parental target. :-(

We have started down the path of speaking with a paediatrician. So far only blood work and a stool sample have been taken.

Given that my son has never complained of tummy issues, never had reflux or vomiting, and the blood and stool sample
have come back astonishingly normal, the pediatrician is pretty certain that we can rule out celiac disease. “Not 0 probability, but close to 0” he said. So suspicion is that there is likely something else going on: growth hormone deficiency, some genetic abnormality, etc. So we have a lot of tests lined up (growth stimulation, x-rays, etc etc) over the next few months. It looks like this will be some journey.

However, I just can’t get over the fact that:

• While he never complains of tummy aches, his poos are really foul smelling. They often are either (1) quite sticky and slimy OR (2) quite watery looking.
• He toots a lot! (My only frame of reference is his sister)

I’m not a doctor but my instinct tells me there is something to the above 2 points, despite the “normal” bloods and stool sample

(1) does anyone with any experience of celiac have any thoughts?
(2) is it worth pushing for a genetic test in case he does have asymptomatic celiac where the only manifestation is short stature?
(3) would it be a terrible idea to put him on a gluten free diet anyway and just see if his growth velocity improves?

thanks!

Having had a non-coeliac gluten intolerant child with awful stool and low weight in comparison to her twin (had tons of other intolerances too; only gluten and dairy persist in her teens) that’s exactly what I did — I took matters into my own hands and implemented GF for her. Her overall health, height and weight improved so much ended up with ‘Treat as Coeliac’ from her consultant that she was never made to do the challenge which would have involved going back on gluten.

Definitely don’t stop gluten if you’re trying to rule out coeliac. I think blood tests can be clear or inconclusive despite someone actually having coeliac. My friends DDs only sign throughout childhood was very slow growth and being a slow, fussy eater. At about 13 she started with stomach aches and was referred to a paediatrician . Her blood test was inconclusive and they did a biopsy which was positive. After 2 years gf she is now the same height as many of her peers and looks like a teen rather than a little girl.
The slimy, smelly , sticky poo and lots of wind would make me inclined to follow your gut, pardon the pun.

(3) would it be a terrible idea to put him on a gluten free diet anyway and just see if his growth velocity improves?
No it is worth considering. My DS was not picked up until his mid-teens and had 2 endoscopies under GA with the first showing some damage but them being reluctant even then to assume it was coeliacs.
Why risk such unnecessary suffering? If it doesn't help, you won't have harmed him whereas at the moment you are concerned about the lack of growth. Best wishes.

How is he with coughs/chest infections?

I have a similar thing with my toddler at the moment - she's had diarrhoea multiple times a day for four months. All cultures were negative (testing for a bug), the IG test for coeliac was negative.

However, I am coeliac so knew there was still a greater chance she is despite the blood test. I cut out gluten from her diet and three days later her stool was normal and tummy pains gone. Two weeks later nursery gave her a cracker and then she had diarrhoea all weekend.

I'm not going to keep on giving her gluten and waiting for her to get more sick when I know what the problem is. However it makes it difficult to pursue a diagnosis!

If your DC's 'trackable' symptom is diarrhoea you should be able to cut gluten for a short time (say 10 days) and see relatively quickly if things improve, reintroducing to 'confirm'

Thank you so much for the responses! This is incredible my helpful.

@MooseBeTimeForSnow I don’t think these are an issue for him. He doesn’t get sick very often actually. He’s pretty robust!

The only other “anomalies” I‘ve noticed about him are:

• he has very slow nail/hair growth compared to his sister.
• he is a very fussy eater and often gags on more interesting foods. When that happens I just tell him not to eat that particular food.
• he seems to tire much more easily compared to his peers
• he looks much younger than similarly aged boys (more baby like in his face and body) but cognitively he seems to be doing well.

Thanks!

Tiredness is definitely one of the symptoms.

Has he been checked for B12 deficiency (pernicious anaemia)? Some coeliacs suffer from this.