Anyone else have a skinny dc that poos for England??

[bootus]

I'll try and keep this brief.... . DS, just 2 has always been a skinny little thing (Dad and I are slim). He dropped through the weight centiles quite quickly after his 1st birthday due to various bugs that winter. He was a refluxy baby and, to my dismay, has never been a good eater. He also poos at least 4 times a day, normally quickly after he has eaten. A very good day would be 3 poos, a bad day, maybe 6. I posted on here about 9 months ago very worried about his lack of weight gain and was told to seek advice re coeliac disease which I duly did. Upshot is we were referred and the blood tests, thank goodness, came back clear. We were discharged from the paed gastroenterologist as he had gained some weight over the summer with a hight fat diet and all was well. However the last few weeks he has gone backwards, eating very little and pooing frequently, often his stools are a pale colour. I dont know where to go next but still fell something isn't right. He seems to get bugs very easily but in all other ways is happy and developing normally...am I being over anxious and this is just the way he is or do I need to ask for more tests...if so...what?????

Oh Bootus I have no idea - poor you, you must be worried. I'd go back to the GP and explain how things are now cos the paed might see him again - mention the pale coloured poo as that can be significant I think...

And my ds, who poos for Scotland, can take him on in a competition .....

Celiac test only picks up the most severe end of the spectrum, my theory is suck it and see (=decrease wheat mainly).

My ds celiac test was negative but came with a note that in under 16s they can be false-negatives. I put him on gf diet and couldn't believe my eyes, later he was found to be gluten sensitive and this cannot be picked up by any celiac test.
Improvement on high-fat diet suggests he doesn't absorb fats well, which is a classic symptom with gluten issues. Rather than going high-fat, try going wheat-free at least as a trial, then stand back and watch in amazement like I did and still do :)

Hi Bootus, I can't remember if I posted on your previous thread.

The coeliac blood tests are quite unreliable for young children but I would be tempted to have another blood test and maybe biopsy. If it is Coeliac Disease then a diagnosis means yoou can get free gluten free food on prescription, get advice from a dietician and also have regular check ups at hospital at the Coeliac clinic.

Is his poo acrid smelling, does he have a bloated stomach despite being skinny, pale complexion with dark circles under eyes? Does he complain about tummy ache, leg ache, need carrying a lot and wants to be carried upstairs at bedtime?

Here is a thread which might be useful discussing testingwww.mumsnet.com/Talk/allergies/614748-coeliac-symptoms-would-a-scan-substitue-for-biopsy

If you are having tests /biopsy you must continue normal diet until all tests completed. If you are not planning on further tests you could try cutting out all gluten and see if he improves. My youngest was noticeably improved after 2 weeks.

Good luck, hope you find some answers.

Thankyou so much for your kind responses. My gut (excuse the pun) feeling is that something has been missed though I was unaware quite how unreliable the blood tests are. Booner, yes his stools are very acrid smelling and he is pale and dark eyed but he doesnt seem to be in pain, maybe bit young yet to vocalise specific discomfort tho? And I did wonder if the pale stools indicated that he was not absorping fat though was unaware that it was a classic gluten sensitivity symptom. I have another appt with my GP so will see if he can re-refer. I got the impression that the biopsy was a last resort and obviously I would want to avoid a procedure if possible. I am quite happy to try a gluten free diet for a while to see if that helps and think that it might be my next option, it just seems a bit daunting with where to start etc!

You know what, I would say to dr that you suspect gluten issues and whether he would be in favour of diet trial - you could be going on for years w/o any black and white results and wondering what to do. There are lots of issues around gluten, but as gluten itself is not an allergy, all tests are looking for secondary problems and there could potentially be loads.
I had to do it my way as mine was so poorly that I wasn't prepared to see him suffer any longer and I just had to know if there was a chance this would work - and all drs we saw at the time were very sceptical.
However, it worked and since then other drs have taken it on board and are very helpful.

Thankyou for all your advice, I think I will speak to the dr and ask if we can begin a diet trial and cut gluten out. I just figure if we see an improvement then fantastic and if we dont then we've lost nothing. Can I ask if you cut all gluten out immediately, or gradually cut it out? and lastly, how will I know if its a gluten intolerance or simply a sensitivity to wheat? Many thanks for your help.

We did it literally overnight with barely any prep, hunting around the kitchen for stuff that didn't have wheat in I was so desperate to just know one way or another. Probably better to at least plan ahead so you work out the menu a few days ahead. Also, you might see the response better if you cut it out completely.

If it does work, then you will soon know what he reacts to as you would see some kind of a setback, for mine it was not so much gut but speech and lack of response, it was as if he didn't hear/understand what I was saying.

I now look at the diet as a lifestyle choice, not an illness and don't rely heavily on substitute carbs as there is not much nutrition in carbs anyway. Even if all those cereals are vit-fortified, gluten prevents absorption of nutrients, so not much use. Best to rely on fresh natural ingredients, although it means a lot more home cooking from scratch. For me, it's definitely worth it.

Thanks nightcat, I tend to cook from scratch most nights (with the odd lapse, esp at the moment as am pg and suffering with food smells! )I will go to the shops tmw and stock up on the basics and also snacky bits for childcare days. IF it is this will I see an improvemnt in his appetite as he barely has one, bar the odd successful meal?? I just want my little boy to look healthy, enjoy food and put some weight on!! thanks again.

You will probably see a change in appetite, maybe not day1 though, give it a week or so. When he starts absorbing nutrients better, he will put on weight quite soon (mine did). I knew within 3 days that there was a positve change in terms of response & speech.
Also, he might suffer some kind of withdrawal symptoms so a good idea to start with substitutes for a few days to make the change less obvious. But make sure you also use proteins and veg in meals (ie not just carbs).
Some drs are better now on this then they used to be, maybe you will strike lucky.
In the meantime do read up on research, even wiki is good, also pubmed or medical journals. Your ds should bounce back in no time at all.

Hi Bootus,

I think nightcat gives good advice. You do not want to spends months and years with a poorly child and no diagnosis. Your DS may not have Coeliac Disease anyway.

I was lucky because I got a definite diagnosis from the blood test and because my niece already had CD we were spared the biopsy.

The way I started gluten free (as my memory is useless) was to clear out one cupboard and then only put things in there that were gluten free to save checking every item every time you cook.

I cook from scratch a lot but I also had some gluten free convenience food in just for peace of mind so I knew I had something in if I needed it.

My boys (both Coeliac) couldn't even tolerate cereals with barley malt extract which is all kelloggs and most own brand cereal.

As nightcat says if it is gluten then you will notice an improvement in days and after a few weeks the change is remarkable.

If you want any more info please ask.
Hoping your DS improves soon

Thankyou so much booner, if anyone can be bothered to let me know any gluten free foods their dcs love or must haves for the cupboards/freezer id be really grateful. Any other hints or tops welcome!

Tips even.....

Caseroles/soups with some meat in them,far better than separate meat & veg on the plate.
Omelettes/scrambled eggs with all sorts inc herbs mixed in.
U can get decent gf pasta (rice&veg) that really isn't any different to wheat pasta, but jazz it up with not just pesto (which is OK too), but also veg & some meat.

Hi Bootus,

They can't have wheat, barley, oats, rye.

I try and look at all the great basics they can have meat, fish, eggs, milk, most yogurts, cheese, rice, potatoes, veg and fruit rather than thinking what they can't.

Gluten free pasta is great but don't overcook it.
Risotto
Egg mayonnaise
Pizza made with gluten free base
Pancakes for breakfast

Not sure whether you use sauces at times but Heinz pickle/Colmans tartare sauce/Heinz ketchup/Hellmans mayonnaise I was avoiding anything with barley malt/barley malt vinegar

Knorr or kallo organic stock cubes

Don't assume you have to buy everything from the Free From section a lot of day to day things are already gluten free.

Convenience - look in the freezer section, gluten free fish fingers, oven chips (not things like home fries with a coating), frozen veg, watch out for things like breaded ham and most sausages have wheat based fillers in but I think all supermarkets now have some gluten free ones in, baked beans.

Most breakfast cereal has barley malt extract in which I avoid. We use Whole Earth cornflakes(on the normal cereal aisle in Sainsburys), Free to enjoy cornflakes,

Doves farm flour

Treats or for parties - normal crisps (not hula hoops or similar) vanilla icecream usually fine but other flavours read ingredients, chocolate - cadburys is well labelled
Other favourites - Gluten free kitkat type biscuits, jaffa cakes, jammy wheels

Hope this helps

Thankyou SO much, we started today and it did feel a bit daunting at the supermarket with the limited (and expensive!!) range of 'freefrom' foods. I have been doing some research and found that a lot of things do come gluten free, eg good quality sausages, houmous etc. The bread seemed to go down quite well as toast this morning, as did the cereal. Cant wait to see if this will make a difference over the coming days!!!! Again...thankyou for all your advice, 'tis muchly appreciated. (One last q.....does anyone know if abidec vitamin drops are gf??)
xxx

Sorry, can't answer your question but good luck with the diet.

Hi Bootus,

Hope all goes well - I really hope you see a good improvement. It is daunting initially but once you make the decision and get started it will get easier.

I don't know if we dicussed about cross contamination issues such as don't use a toaster which has had regular bread in it unless the gluten free bread is in a toastabag or toast it under the grill.

Also it is good to use separate butter/jams/spreads to avoid crumbs from normal bread or only get spreads out from the jar with a clean spoon or a clean knife whether you are using normal or gluten free bread.

Sorry don't know about the Abidec drops

Give us an update at some point if you have time.

Thanks booner, I really appreciate all your support and advice. I did wonder about the toaster/knife thing. Hard to believe a few crumbs could make that much difference. Today he is with grandparents while I'm at work so I really hope they take it as seriously as I need them to. Did you have the odd slip up at the beginning? I can just see that accidentally someone might give him a crisp or biscuit until we all get used to it.....like I said, all a bit daunting!!!!

Sorry if the cross contamination has added to the stress, but didn't want all the effort being messed up with a few crumbs. My youngest had one bite of a honey glazed parsnip (which we had been told was gluten free!) that had wheatflour in the glaze and was sick all night - it really is astonishing

I was a complete nervous wreck initially and slipped up a few times as some things you do automatically. You have to retrain how you work in the kitchen.

You are doing a rgeat job as it's a lot to take on especially if you're pregnant and affected by food smells (I was the same).

I'm actually eating loads of gluten (on my own away from the children!) at the moment so I can get a Coeliac test done. I was virtually gluten free for a few months and felt so much better I thought I'd better get myself checked out!

It's helpful to have a few gluten free snacks with you when you're out and about.

I am really hoping he improves like mine two did.

Whilst you aim for 100% gf, it's almost unavoidable that something will occasionally catch you out. If the gut damage is not severe, you might notice a setback, but not necessarily a complete wipeout to square one again.
I really think that the health service is not about health at all and not about prevention either. I mean, if I know something makes me ill, why would I want to eat it? Then again, there are people who smoke and take drugs so I guess it all depends whether we care about health generally.

When I found out that sevee gluten damage is irreversible (straight from a drs mouth), that alone was enough to make me gluten free with my ds (his symptoms were much more severe than mine).

Rather than make myself unwell, I don't have wheat. There are loads of other foods, naturally gf and far more nutritious than substitute carbs.

Just another thankyou (and couple more q's) esp to nightcat and booner. We are on day 4 today, so far so good, the snacks are going down well and Ive managed to make gluten free meals every night which with one exception has gone down very well. I'm not sure whether its a coincidence but in the last 3 days we have had a max of 3 poos a day (and small ones as opposed to yucky full nappies) nor do they stink as much (horrid thread to be writing at dinner time! sorry), tho still quite yellow. I'm sure we have made the odd balls up (crumbs in the butter etc) but I feel like we are doing something positive. Booner, you mentioned that ketchup should be avoided but according to the website its gluten free....whay is it again that I should'nt give it? Also, does anyone know which everyday chocolates are gf, ie; cadburys buttons, milkybar etc as the grandparents do like to give a treat and I would like to pre-empt this.....again, thankyou. xx

You can call it coincidence if you like but happy for you :) :) :) coz been there myself and as I said, stand back and be amazed (for my ds it wasn't so much as poo, but brain function+++, how mind-blowing is that!).
Fixing poo colour might take a while, coz going by my ds, his liver function was low for at least 2 years since starting diet (this going by liver/pancreas tests not poo colour), but these have improved to normal.
Bile (liver enzymes) give poo colour, this will pick up prob sooner for your ds as he is younger than mine was when we started.
Some ketchup is gf, some not, Heinz is gf afaik, most plainish/dairychoc is gf but obv not the kit-kat type.
Don't get yourself too worried about a few crumbs, if his gut hasn't been severely damaged, he will cope with it without going completely back to square one. If my ds gets accidently glutened, I can hear it in his speech and see it in the way he shuts down, but he doesn't fall over like before and it doesn't take weeks/months to bounce back, just days.

Hi Bootus,

Just reread my ketchup post - it makes no sense REALLY sorry.

Should have read "Heinz pickle/Colmans tartare sauce/Heinz ketchup/Hellmans mayonnaise ARE ALL GLUTEN FREE!" Sorry to have confused you.

The bowel movement improvements are a great indicator that things are improving for him.

As Nightcat says stand back and be amazed - I was!

Gluten free treats - Cadburys buttons, single Twirls (check the double twirls), Cadbury crunchies, Cadbury Fudge, Haribos, Matlow Swizzels sweets like Drumstick lolly, Chupa chups lollies, Thorntons have good labelling for allergens, Walls Mini milk ice lollies and walls plain, milk and white Magnums.

Cadbury are good as they have the bright yellow allergens box on the packet.

Mars, Nestle and Milky bar not sure about.

I have got The Gluten-free Cookbook for Kids by Adriana Rabinovich which has good ideas and is about £7 from Amazon.
Has sections on Top Ten favourites, breakfast, lunch and light snacks, teatime, sweet things and part food. Particularly love the cheesy snakes, choc chip cookies and cupcakes.

Cheesy snakes and cupcakes freeze well and you can get them out when you need them

Happy to answer any more questions.

Pale Stools are a sign that the body isn't absorbing Fat, i would take him back and get him checked.

Thanks again for responses, v.helpful with the food lists booner, cheers so much!!! We had a gp appt this morning (started a surgery every 3rd sat which was handy as DP could come). Basically we explained our reasoning for starting the diet and voiced our concerns. He was very nice and agreed that we were doing the right thing, he said to give it 4-6 weeks and then slowly reintroduce gluten to see if he went backwards. He said if there was not a major difference in this time then we would have to eliminate dairy followed by specific foods etc until we find what the prob is. Hopefully none of this will be needed as gluten is the culprit! He said it was highly unlikely he was a coeliac sufferer due to the blood test results but that this certainly didnt rule out a gluten intolerance. If anyone has opinions on that i'd be grateful. Tits....he seemed unconcerned about the pale stools, ds did seem to have a virus a couple of weeks ago so it might be down to that OR a food sensitivity. Obv will keep an eye on it and go back if we are still in the same situation in coupla weeks. Have to see him again in a month to see how we get on.....