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9 year old boy dropped from 25th to 2nd weight centiles in 6/12 months

(11 Posts)
moosemama Wed 07-Sep-11 10:35:12

He was taken of gluten by his paediatrican last September, as despite his coeliac test being negative, his food diary and digestive issues correlated with eating gluten and in the few months we had trialled gf the year before he gained weight and grew.

He was seeing a dietician and saw her regularly, but she was happy with his diet, he again started gaining weight almost as soon as gluten was removed from his diet and in January she said there wasn't really any more help she could offer, as he has a great diet and everything seemed fine.

He saw his paediatrician again in January and he agreed that gf seemed to be doing the trick and to keep him of gluten from then on. At that point they told me he had gained a good amount of weight since the dietician weighed him in September.

End of May/June I noticed he was very tired and seemed pale and thin, so weighed him at home - he weighed 1.5 kg less than he had in September, which effectively meant he had lost more - as they said he'd gained from September when they saw him in January.

I took him to the GP, who felt it was significant enough loss for him to need to see the paediatrician and referred him back.

When we were on holiday this year, there was a problem with the toilet in the bathroom the dcs were using and it didn't flush things away properly, so I was able to go in a check what ds1's digestion was like. He was passing pale/yellow/greyish stools which floated OR huge great piles of sort of fluffy yellow/grey stool. Obviously not healthy and very similar to the ones he was doing that made them consider testing for coeliacs. To me this still looks like malabsorption and this is borne out by him being tired and pale as well - despite having a very healthy diet and regular good quality supplements.

I have just weighed him again this morning. His weights are as follows:

Sept 2010 - Dietician - 24.5kg (54lbs) 25th centile for weight

June 2011 - Mum - 23kg (51lbs) 2nd centile

Sept 2011 - Mum - 23.7kg (52.2lbs) 2nd centile

He is 129 cms, which is just above the 9th centile for height. (I think that's just half a cm height growth in 12 months - but am not 100% on that because the hospital didn't write his last height measurement in his red book.)

He's due to see the paediatrician at the end of this month and obviously I will take the weights with me, but I was wondering if anyone has any advice as to what questions I should be asking - or if there is any more information I can provide which might help the paediatrican work out what's going on?

DeWe Wed 07-Sep-11 15:58:46

dd1 was 27kg at 7.5yo, then the next time she was weighed at nearly 9yo she was 26kg. She had pneumonia at the time, so they did expect a weight loss, but not to that extent. She dropped from nearly 75% to just above 25%. She has stayed on the 25%.
Her Gp was concerned on the weight loss/lack of gain and ws thinking of testing her for various things including coeliac.
They monitored her weight gain for about a year, and as long as she was putting and going up the 25% they weren't worried.
He appetite has dropped since pneumonia, and from a child who'd eat everything and whatever was on her plate she eats very little. Has his consumption gone down?

moosemama Wed 07-Sep-11 16:10:02

Thank you for replying DeWe. I experienced a similar situation with my other ds when he had a serious case of pneumonia at the age of 4, but ds1 hasn't had any serious illnesses to account for the weightloss.

The only time he's passed anything close to normal stools was in the first couple of months after coming off gluten, but now I'm wondering if gluten is a red herring and isn't actually the problem. I think its possible that removing gluten just took the load off his digestive system for a while, which resulted in a temporary improvement.

I was slightly encouraged to see the, just over 1 lb gain since June, although we have been making a concerted effort to get calorie dense food into him, but he is still tiny and all skin and bone, despite being the biggest eater in the family. He eats almost double what his Dad eats and often has seconds and even thirds of his evening meal. His brother is two years younger, 5cm shorter but only a lb less in weight and he eats probably a third of what ds1 eats on a normal day.

nightcat Wed 07-Sep-11 16:35:12

moose <hello again>
Agree that it's still looking like a malabsorption - so a few ideas for you to think about:
To restore proper digestion post-gluten takes far longer than drs often assume, as body has to rebuild a fair bit in terms of health (gut, detox, enzyme production etc), my dr said it will all fix itself in less than a year, but when tested 2 years later he was still very deficient in nutrients despite really healthy (GAPS) diet and supplements - and supplements don't guarantee anything unless they can be absorbed.

The initial improvement occurs as the stress of coping with gluten is released, but it's the rebuilding that takes far longer. My ds liver enzymes are still in low range (5+ years on) and your ds poo sounds like low bile/liver enzyme production (pale etc). Best thing is to use soups etc to provide liquid-aminoacids to improve absorption. Digestive enzymes are made from aminoacids so you need to make sure he gets all essential aminoacids to stimulate their production (my ds stomach acid was very low and he couldn't cope with proteins, it's like you can't give mega-doses of anything as they don't make enough enzymes so might be sick, a bit like you have to go slow when you have been starved). That's why soups are great, as you can't overload with that.

Also, I was horrified approx 6 months into the diet when my ds started reacting to other foods and developed rashes and stretch marks and I was v worried that we would need to start cutting out more. Does your ds rely heavily on any particular foods? We had to limit corn as my ds was reacting to that (with cough, like asthma) and also beans can have a similar effect to gluten as they contain lectins. The key is a large variety and quality proteins.

The post-gluten recovery is a process and you need to allow more time, also, supplements need to be given with proteins to facilitate absorption.

nightcat Wed 07-Sep-11 16:41:05

just seen your next post, moose, if he is eating lots then there could be still something he is deficient in and not getting iyswim?
I would ask for liver enzymes test and also vit/minerals test to see if he is absorbing all nutrients.

moosemama Wed 07-Sep-11 17:42:52

Hi Nightcat

He doesn't rely too heavily on any single food, he used to and it was wheat based products, he would live on pasta and toast if I'd let him. He does have a fair amount of dairy though, as he's a militant veggie and I think I've noticed a correlation between a big intake of dairy (eg macaroni cheese) and bouts of diarrhoea.

The other food I wondered about affecting him was the gluten free oats he has made into porridge every morning. We tried him on millet porridge and he loathed it (tried it myself and can't blame him really) and its all he wants for breakfast, so we now buy the ridiculously overpriced gluten free oats.

He also has some sensory issues around some foods - soups being one of them unfortunately. He hates anything mushy or mashed, or grainy and textured. He also has a heightened sense of smell, which can be an issue with some foods. He might go for clear soups, but not sure how to make them nutritious and vegetarian at the same time. He absolutely will not entertain any form of bean.

We do our best, but I do worry that his diet properly balanced, due to the sensory stuff and the number of healthy foods he should, but won't eat as a vegetarian - eg pulses, beans, nuts. We have worked on this though and he does eat home made falafel now (so chickpeas), will tolerate red lentils in his pasta sauces etc and more recently has agreed to eat almonds, although he does already get a fair few ground almonds in home baked foods.

The dietician was very impressed with his diet and said, given the restrictions, she didn't think there was much we needed to do to change it. In fact she was pretty hopeless and seemed to know less about it than I did. hmm

When I took him to the GP in June I asked for an Iron and B12 test and they said the results came back fine, but I'd like to know what their idea of 'fine' is.

I think they did a liver function test as well - is that the same as liver enzymes or do I need to ask for that specifically. I do know they did a diabetes test that came back negative.

He has his supplements in the morning with his porridge (which is made with milk) and loaded with fruit. Would there be enough protein from the milk to aid absorption?

nightcat Wed 07-Sep-11 21:57:25

Try and get copies of his results as some of my ds were pronounced as normal but were borderline or even deficient, this was esp in liver function where a number of enzymes were way below normal range. When I spoke to the consultant, I discovered that they mostly look out for upper ranges and not lower, so he could be borderline low or even deficient but still described as normal like mine was.

I went over the tests myself line by line, trying to understand what it all meant and kept asking questions at every opportunity using various sources. A few of his liver enzymes still don't show at all despite reference ranges being present so I am still working on this. I know zinc is v v important and it has definitely helped my ds (Zn is a catalyst for lots of enzymes). Zn also helps with taste regulation, immunity etc.

I am not a big fan of milk, don't have any myself, just a little cream now and then, same for my ds. Very occasionally I get goats milk for hot choc for him, he does have some cheese, but mostly goats too. I don't think there is much protein in milk - check the box maybe? Well, there is lactose, casein etc but some of us can't break them down, so we might not be getting the aminoacids we need? I also read somewhere that dairy can affect absorption, the unscientific example given was that if it covers digestive system with white (calcium?) layer of particles that some of us can't digest (like it covers the tongue, say) then until that layer is cleared by the body the absorption will be possibly affected.

When my ds was self-restricted vegeterian, I found out that there are number of nutrients I should have been supplementing, B vits, K vit, aminoacids etc, so I slowly got him on eggs and then later on meat, as I couldn't see (and didn't want) him living on supplements for life. He was also tested for aminoacids and was also deficient, but there was no supplement to address that, in the end we just went back on meat.

My friend helped to convince my ds when she said that she told her dd (who was also trying to be a vegeterian at the time) that until she is an adult, she needs all nutrients to grow - when she leaves home, she can then decide how she wants to live or eat. It rang the bell with my ds (and me, as I had been too accommodating really to let him self-restrict).

You can also check nutritiondata website for foods with aminoacids, some of the foods it shows are processed, but maybe look at those that are not processed. My understanding is that eggs contain most if not all aminoacids we need, but prob depends on quality too.

moosemama Wed 07-Sep-11 23:15:00

That's what I suspect. I know my Mum was consistently told she had 'normal' results for her thyroid, when it turned out she'd been sitting on the lower cut-off for years. One particular dr decided to try her on Thyroxine and she's never looked back.

The vegetarian thing is tricky, because dh and I are veggies, but ds is far more militant - he read a book at school about meat farming which really upset him and being AS, its ulikely we could persuade him otherwise, especially as we would have to explain why we don't eat meat ourselves. We are pretty strict and make him eat quite a few things he doesn't actually like, but when it comes to the sensory stuff, he just cannot do it and ends up so distressed that its just not viable.

We buy free range eggs from our local farm shop - they're huge with big thick shells and afaik that's a good indicator of quality. He's not keen on eggs really, but they're one of the foods I make him eat even though he doesn't really like them.

As for the milk - its a big worry of mine - I'm not big on dairy myself, but if we have to remove it from ds's diet we are going to meet with huge resistance from him and struggle to balance his diet because there really is no way on earth we are ever going to get him to eat meat. He is already very unhappy about not being able to eat gluten, if we remove dairy as well, I can just imagine the reaction - in fact, after the initial explosions, I think he'd probably refuse to eat altogether.

Thanks for all your advice - I wil read it again tomorrow. I'm not taking it in well tonight, am exhausted right now as ds has had the mother of all meltdowns this evening - he doesn't do school year transitions well at all!

Can I just ask, if you don't mind, have you had to go private to get any of his tests done - or were you able to get the NHS docs to agree to them?

nightcat Wed 07-Sep-11 23:46:34

We have had a great paed for many years and begged out most tests on NHS, admittedly they were not that frequent as I needed time to go over stuff b/w the appointments (aminoacids best done in blood and urine at the same time for more meaningful result). More recently we have just done urine as my ds got fed up with needles.
We did a few private tests too, inc some vitamins and omegas and a hair test, but I would say, armed with GAPS book, you can deduce a fair bit from observation or symptoms.
When we first started, my ds skin was rough and dry like a sandpaper and it was astounding when I met omega3 expert who pointed out to me why no creams/ointments have ever worked just by looking at him. Was impressed to see how quickly things improved just with flaxseeds then and went from there.
Does your ds eat jelly stuff? Gelatine is like processed stock. <apologies if that's off your menu>

moosemama Thu 08-Sep-11 10:44:24

That's interesting. I'm not sure how helpful our Paed will be, he's a bit of an odd chap and very much in the 'let's wait and see and we'll have him back in a couple of months' camp. Which is really starting to make me angry, because this has been going on for two years.

Ds used to have a raised, rough rash on both cheeks - basically from weaning onwards. It reduced significantly and even went away for a while after we removed the gluten, but disappeared permanently when we started him on good quality high strength vegetarian omega oil.

He does choose to eat the occasional jelly sweet, so he does eat some gelatine, although if we are buying, he usually reads the ingredients and chooses things that don't contain it. He only tends to have sweets that contain gelatine if they are given out at school, because he has a thing about 'fitting in' and trying to appear as 'normal' as possible.

I have never made a big deal about gelatine, because so many children's treat's contain it that it would have meant the dcs missed out on so much with sweets given out for birthdays at school and friends birthday parties etc. Particularly as ds1 has a major sensory issue with chocolate. (He can't bear even the smell of it, can tell in an instant if someone is eating it in the next room and it makes him feel sick.) I don't buy things with gelatine in for them myself, but I don't make a fuss if they want to eat some that they've been given either.

nightcat Thu 08-Sep-11 11:41:27

WIth our paed, my ds was in a very bad state when we started and no one saw any hope at all, I was so desperate that I cried as refused to give up on him when everyone did. I did most of the research and basically explained that I needed help to see if anything could make a difference.

I usually went in asking for specific tests and explained why I needed them, sometimes with research papers to show what I was on about. I wish it wasn't so complicated to get the private tests here, in some countries in Europe you just go straight to the lab and ask for whatever you want w/o drs referral (and expense associated with private drs appts), you just pay for the tests.

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