Fed up with ds (6) bowel problems, constant looseness/bloating/pain/wind - any ideas?

[myfaceisatomato]

Ds is 6 and for at least the past two years has had pretty horrendous tummy problems. Basically, about 20 minutes after eating he needs a poo - really urgently. He gets pain and pretty appalling wind too. The poo itself is explosive, loads of wind and tends to spatter everywhere (sorry). He's going maybe 4 -5 times a day and sometimes has problems controlling it if he isn't within a minute of a toilet.

He got referred to a specialist two years ago who initially said toddler diarrhoea then changed his mind 6 months later and said constipation with overflow. Blood test for coeliac was negative. He was put on a high fibre diet which made things just appalling.

He's now stick thin with a horrendously bloated stomach and has gone from having a great appetite to being really picky and doesn't want to eat much. GP wants him retested for coeliac and has referred him to a different hospital paediatrician.

I'm so sorry this is long but I feel at the end of my tether with it all - he's really suffering. Has anyone got an idea at all as to what this might be? The first specialist refused to consider allergies (we did try cutting dairy out completely for a while but it made no difference at all). I'm not sure about the coeliac issue, I can see it from some of the symptoms (and my family has a pretty grotty autoimmune history, lots of diabetes and Crohns disease) but he was tested two years ago. Constipation seems unlikely to me just looking at the sheer amount of poo he produces? Help!

You can have a jejunal biopsy for coeliac as well as a blood test. Have you tried cutting out gluten and then re-introducing? That was my first thoughts reading your post.

I asked the first specialist about cutting out gluten, he rolled his eyes and said "if I had a penny for every mother that thinks that would help ..." and then said it was a really really bad idea to cut anything out without his sayso. We did cut out dairy (against his advice) but that seemed much easier than gluten as he's not crazy about dairy stuff anyway. Is it too late to do it now (blood test is next week)?

Don't know enough about it tbh. Will go away and have a read. I hope the pead is a bit more helpful than the first - surely they have to find a reason - poor little thing, sounds horrible . Will see what I can find out

I would definately, without question, pull gluten

My son is not ceoliac but his gluten intolerance gives him all your sons symptoms and some more besides.

Removing gluten is not terribly diffiocult tbh - with genius bread and gf pasta everywhere. Of course it is more complicated than that but I did it for DS2 without having ever been near a dietician nor a specialist.
He is soooo much happier

Myface,
Both my boys were diagnosed with Coeliac Disease.
Your DS symptoms sound similar to mine. My youngests (3 when diagnosed) symptoms before diagnosis skinny, really bloated stomach, explosive acrid smelling poo, lots of smelly wind, stomach pain, restless sleep, pale face, dark rings under eyes, constantly tired, complained of legs aching.

I think I would have a retest for Coeliac Disease but he needs to have been eating gluten so I would get all the tests done before cutting anything out.
You can get false negatives with the blood test so maybe ask about the biopsy as well.

I can really sympathise as my youngest was so bad before diagnosis I had to carry him everywhere as he didn't have the energy to walk.
Do you have an appointment yet? I hope you get better care from the new paediatrician and find out what the problem is.

Thank you both, wish I'd tried cutting it out earlier and seeing if it made a difference. GP is lovely and has said we need to get to the bottom (ha ha) of what's going on, I just wish we hadn't spent two years messing around hoping things would improve on their own.

myface

don't waste time feeling bad. we can only go with the info available. I was just lucky that DS2 was so bad I was prepared to try it on my own.
It is understandable that Gps etc worry about removing chunks of a childs diet. it is reasonable for them to be cautious. We just have to balance whatthey say with our knowledge of our kids

Thanks pagwatch.

I would go back to your doctor. It does sound like coeliac disease. The negative blood test could be because your son is IgA deficient (i.e. he doesn't produce the antibodies they are looking for). There is a blood test which tests for IgA deficiency which can be done at the same time as the coeliac blood test - a negative coeliac test with an indication that there is IgA deficiency would indicate it might be a false negative given your DS's symptoms.

Good luck getting a diagnosis - it took me eight years to get my son diagnosed!

Elimination diet. Cut out gluten in all forms for two weeks and see if his symptoms improve. Coeliac tests are notoriously unreliable in children.

I've just looked on the blood form I've been given and it says "TTG, CRP". GP was pretty horrified by the size of his tummy (together with the fact that having just had a poo 10 minutes before the appointment he clearly needed another while we were in the dr's office). I'm quite hopeful with this GP he seems prepared to dig till we get an answer.

I can't help much on the possible diagnosis, as I'm going through similar with my own DD & so far getting nowhere, though thats not been helped by our GP diagnosing IBS & refusing a hospital referral as she reckoned it would just get reffered back to her for management that is until I went back recently as its out of control & told her I was booked for a second opinion but needed some sort of short term help as DD has been VERY ill with it lately & missing a lot of School again, getting sent home etc.

I do know with my own DD that she is very chemical sensitive, & any artificial sweetners, certain preservatives (benzoate ones) & colours set off bad flare ups, as does stress.....last ongoing problems we had turned out to be caused by problems at School with a very disruptive out of control child in her class, who she feared & hated, but sadly the child had "a soft spot for her" & wouldn't let her be....so in the short term that might be worth talking to your DS about.

We are finding with DD, that everytime she needs antibiotics, her problems esculate, & shes now also wheat & dairy intolerant, she could before eat cheese ok, but not drink milk, but now its everything, but she can usually drink lactose free milk....... so I've been giving her the Viridian synbiotic Childrens stomach flora powder, which have helped a bit, but not enough, but are good to give her regardless

I've no answers, but I have had a bit of a breakthrough, in that her School nurse suggested a bland roughage free diet for a few days, & I was already looking at a macrobiotic type elimination diet avoiding all possible irritants, such as those above, & the nightshade family of veg, which includes potatoes & peppers........

so I've taken the roughage free diet a step further, & since yesterday I've given her nothing but fish & white rice,....the fish will have omega oils, which are need amongst other things for gut health......also with a bit of low salt over it, as it contains sodium & pottasium, as she is losing so much fluid she needs rehydration salts,........

I've also cooked the rice with Tumeric, which is a spice that is also used as a stomach medicine in India etc, it has little flavour of its own so DD is happy to eat it.........even the Buscopan our GP give her this week did not stop the diareah & cramps, but touch wood, the above has

its the first full nights sleep we've had in weeks, & no diarreah at all since yesterday morning when she was again ill at School , & though her tummy is still very tender, the cramps seem to have stopped too

I know this isn't a cure, as like you this has been ongoing with flare-ups & we;ve only just now got a hospital referral, but at least it seems to be working to give her a break & help her stomach settle down again, so might be worth trying with your DS?

& thanks to those of you with info in the Coeliac test..... both DD & I have supposedly had this test by our GP, but reading this & another thread on ceoliac disease, I can see now it can't of been done properly,

DDs symptoms fit this too, & its in our family, though as far as our GP is concerned its not possible as she has previuosly "thrived", but as I've tried to get her to hear, thats down to the ridiculos amount of hard work I have to put into feeding her an extremely healthy diet, because I worry about her nutritional intake

rockinhippy, that's awful. DS thrived though till the age of 3-ish - was nearly 10 lbs at birth and a really healthy boy till all this started.

We were really lucky as our GP's mum has coeliac disease so we weren't dismissed as neurotic parents.

Personally I was glad I kept mine on gluten until all the tests were complete because if it is Coeliac Disease once I got them gluten free for a couple of weeks and saw such a massive difference in their health I don't think I could have gone back on to it for testing purposes.

I was at the Allergy and Gluten Free show last week and the Coeliac UK lady said that there is a NICE guideline that IBS should ONLY be diagnosed after the patient had been tested for all other possible illnesses including Coeliac Disease.

Thanks myface & booner, I will start another thread with DDs health details so as not to hijack this one but DD mostly thrived until pneumonia at 5........though GP insists shestill is, I went to see the School Nurse who tells me that I am right, our GP is misunderstanding the centile charts, DD is top 75 for height (exceptionally tall Dad) & only 25 for weight, common sense tells me thats not thriving, but GP insisted she only looked slimmer because she's got taller S/N says different, in that there is only an allowance of 2 points difference on the centile charts before they look at it as a possible problem, quite scary a GP doesn't know that, yet is allowed to treat kids

Booner that NICE guideline makes perfect sense, wish i'd known it sooner, though in fairness our GP did arrange a referral when DD was 5 as she was on part time School due to not recovering & stomach issues, but I managed to turn it around with her diet & a brilliant supplement called Spirulina that I found out was safe for kids, its easy to digest, vitamin & mineral packed & has a rare stomach enzyme in it too, thankfully DD is good with taking pills & I cut these up for her......she had rosy cheeks & energy again in a week & was back to full time School in 2 so after all the prodding & poking & scary stuff she went through in hospital I canceled as didn't want to put her through any more unnecessary upset & for a while she was fine but that was nearly 3 years ago, so no real excuse for the GP refusing a referral

I hope you get some answers myface, I know what you are going through, so feel for you & your boy, DDs stomach has still settled a lot, but I can't keep her on just rice & fish, & its not stopping the stomach pain, but it is helping a LOT, as is the spirulina again, so you might want to look into that for your Son