bowel problems

[snowhasmelted]

My first born had terrible diarrhoea from birth which we were always told was due to my breast milk (we now know the same milk didn?t affect all the younger siblings).

Then it developed into toddler diarrhoea so by age 3 he was passing 10 or more loose stools a day which we were told was due to a high fruit, low fat diet and he would grow out of (again we now feel we were being fobbed off and think that it was not actually a low fat diet as he drank huge quantities of full fat cows milk and his siblings who had the same diet but with less cows milk by choice were unaffected).

At age 6 my DS was eventually diagnosed with faecal impaction without us ever having been aware that the bowel problems had changed from diarrhoea to constipation as there were never any signs of straining and the faecal impaction caused overflow diarrhoea. He has been on movicol since then and the impaction has cleared but is still left with no appetite and poor growth.

Has anyone else ever experienced this supposed change from diarrhoea to impaction either as a health care professional or with one of their children? We asked our paediatricians if they have come across it before and they said not but have never seemed concerned in finding a cause. Also does anyone have any suggestions or ideas for tests we might request? Just want to try to be sure nothing is being missed.

reposted from childrens health

Has your DS ever been tested for coeliac disease? Does he have any other symptoms that might suggest a food allergy or intolerance eg eczema, skin rashes, reflux, bloating, stomach cramps etc? It seems truly awful to me that he has clearly been suffering for such a long time and the medical profession don't seem to have taken it very seriously. I would strongly advise you to ask for blood tests including coeliac antibodies (and other general indicators of a digestive problem such as iron & vit b levels). A word of warning though you might find your GP dismisses the idea of coeliac disease but do not be put off say that you want the blood test done away even if only to rule it out.

Thanks for this. Yes DS was tested for coeliac about 18 months ago before the impaction was diagnosed. Test was requested by the paediatrician who failed to notice the impaction so i am not that confident in the results though our new consultant says they are OK ie no false negative due to IGA? Also not sure if impaction could affect results/absorption?

However more bloods are being taken for iron levels which are not increasing despite being on 10mg of sodium feredetate for a year, in fact the levels went down at last test but have only just found that out as no one told us just said it was still low! Therefore have asked for coeliac to be redone as he has all classic symptoms for it and whilst no one in the family has it to my knowledge I have another autoimmune disease which I presume makes him more at risk. No he has not been tested for vit B and no one has ever mentioned it so I will google that to see if it needs considering!

We are under a consultant paediatrician for regular checks since age 2 due to lack of growth and now referred to gastroenterologist so dont have to deal with GPs.

DS has constant stomach pains such that he has almost grown used to them as had undiagnosed impaction for years so doesnt complain much but still mostly irritable and angry. In hindsight I would imagine from birth as screamed from birth and only ever slept on his stomach and we were told it was colic. No reflux that I am aware of though may have as a baby. No eczema and rarely has a rash. Stomach was distended with the impaction but dont think it is now but he is 7 and weighs just 16kg though he is very short too.

He has a tiny appetite, which we were told was due to the impaction. Yesterday he ate cereal for breakfast and an opal fruit all day. Slightly more today as had a slice of toast for lunch but he rarely accepts snacks except maybe an apple and rarely touches dinner though always eats breakfast.

I think part of the problem with appetite is as soon as he eats then runny poo pours out of him and if he gets to the toilet in time it is explosive and he gets stomach pains and it is distressing so he associates food with pain. I think food has always just passed straight through him with no delay for digesting but this has never been tested and I am no medical expert.

Just to say that false negatives on coeliac blood tests are relatively common (false positives on the other hand are very rare). Has he ever had a gastroscopy to have a look at what's going on with his digestive system? Even if the blood test comes back negative I would push for a gastroscopy & biopsy. This will give you a definitive answer on the coeliac disease plus if it's not that then it might give an indication of what IS causing the problems.

Thanks for this. No never had any investigations at all just blood tests. Our paed tried to tell us false negatives are quite rare unless IGA not checked - would that be wrong?

Hopefully now we have been referred to a gastroenterologist it will be more successful. Do you think iron levels should have increased with the supplement?

Has anyone come across similar symptoms to my DS in particular from birth??

I'm really sorry but I have no advice. I just wanted to say your DS sounds similar to what I have. I was also very aneamic (still am!) and my iron levels went down the 1st month I was on iron supplements. Eventually I was also tested for coelics which was negative. I was also diagnosed with constipation which was a surprise as I also go umpteen times a day.

Basically I was given a barium meal. It turns out that my stomach digests at a slower speed than average. Not enough to warrant concerns about the nerves.
WHILST my bowels work at a faster speed than normal. (diagnosed as IBS)

So basically as my stomach starts feeding waste into my bowels they go into overdrive and without a full amount of waste to work on it makes them sensitive, and means I don't absorb enough nutrients. There was/is traces of blood in my stools and often mucas too, from my bowels trying too hard to work on not a lot!

Fybogel didn't work for me. I had magnesium hydroxide and lactulose for a year and it seems to have put things on a more even keel. It will never go away but it's bearable now iyswim?

I do find though that high amounts of dairy really set my stomach off, also high amounts of wheat. I've never AFAIK been tested on IgE levels. I cannot eat that gorgeous MrWhippy ice-cream, or jelly sweets because I just cannot digest them and end up vomiting . I thought this because you say how much milk your DS drinks.

I'm sorry if this is TMI or to much information but it sounds so similar.

Best of luck to your DS.

youarekidding - thank you for this. have you always suffered or did it just develop as an adult? Was the diagnosis IBS or was there another name for the digestion speed or a specific condiiton that I can research?
I dont let my DS drink milk anymore but he may still do so at school neither he nor school seem able to reliably clarfiy despite my requesting a week of monitoring for dietician! He does still have milk on cereal. He is never sick and no blood either but otherwise sounds very similar.

have you removed milk from diet? totally under the support of a nhs dietian?
for a decent length of time and completely?

Thanks for this.

No we have never tried removing milk as neither the NHS dietician or the one we saw privately (as we wanted to double check the NHS advice) were happy to support it and neither is our consultant paediatrician hence referral now to a gastroenterologist.

All we have done is try to stop him drinking milk but this was not on the advice of our professionals but just because I know other people with impactions have been advised to reduce milk.

Before the impaction was found we were being falsely accused of not feeding our DS, presumably they saw it as failure to thrive and as they couldnt see a medical reason decided to blame the parents as he is so tiny. Obviously we had no idea of this at the time and one of the symptoms of an impaction is poor appetite.

Luckily all our other DCs are thriving but it still leaves a huge fear. It is a very distressing accusation as like most mothers I am sure we feel it is a key part of our role and it is hard enough when a child rejects all offerings. I am so thankful that my others eat very well.

Even now when creating the food diary instead of just writing what he has eaten I find myself writing what he was offered and refused and what he wanted but then left!

I was having problems as a child. Always back and forth to the DR and was 9 when I had the blood tests as I was old enough then to be complaining constantly! about how I felt. I was extremely underweight with a bloated stomach, constant diahorrea and often sick.

I was older when I had the tests. It was because they had stopped the iron (I now know because they decided I couldn't absorb it) and I went to give blood. They do a skin prick test and if the blood doesn't sink all the way to the bottom of this blue stuff there's usually a problem. Mine floated.

I was asked to so a stool sample and it's then they found out about the blood in the stools.

I was diagnosed with IBS at about 20ish after they ruled everything else out.

I was late 20's when the discovered the slow stomach, quick/ over sensitive bowel thing.

I know I cannot have any direct milk products. I had cereal this morning and felt sick and refluxy after. Same with yoghurts, ice cream. I seem OK with milk in coffee etc.

I have just worked out myself that I can't tolertate/ digest it well. I have learnt how to control my symptoms and lead a fairly normal life. I do have a problem if I need the loo - as in need it NOW!

i would suggest ringing up allergyuk for advice on this, and perhaps trying some probiotics , from health food shops.

they cant harm, and i have found them to work rather well with my gut problem.

Keep pushing with the docs, hopefully allergyuk can help with this , and question again WHY not remove milk when its a so common a cause of gut problems?

not all peads are that well trained, if at all on intolerences or allergies, so I would ? every thing they say on this subject . after milk is the most common allergen for babies, and this problem started from birth!!! I would talk to pead about going on a elimination diet with support as it cant do any real harm , short term, suggest asking for diet advice during a 10 week milk exclusion diet just to see what happens!

Not removing milk completely wont stop the problem.btw

Thanks for this. We have been advised to wait for the gastroenterologist because the range of food DS will eat is becoming less and less all the time and they raised the concern that if foods are eliminated for some weeks it may not be possible to reintroduce them later and they dont want to risk that.

In hindsight we should have been told to trial milk free years ago when the range of foods was reasonable. It is so distressing to watch DS in pain failing to grow but we are pushing for the referral quickly.

youarekidding - it doesnt sound ideal to need loo urgently even as an adult and my DS really finds this difficult. Is this the case for you even with modified diet?

Its hard to explain - if I need to go I have to go straight away. If I don't (and it's only the past yr or 2 I've had some control as such - beyond 5 minutes!) I get horrendous stomach pains, and can then become constipated.

It's always been this way. I just know now what is best for me food wise and how much. I still go out and eat huge meals in a restaurant - I just have to be prepared for the agony after! Although again I am beginning to know what foods I can eat a lot of and what I can't.

I was like your DS, I was actually scared of some foods and texture, they would make me gag, or I wouldn't even like the look of some foods and couldn't bring myself to eat if they were on my plate. drove my mum mad! Usually food I had had negative experience after eating - even when unrelated. I also use to vomit for hours on one mouthful of chocolate. Again I guess this is the high milk/ dairy content? Luckily I can eat it now but until about 3 years ago the smell of it made me gag.

Now though I have a much wider range of foods I'll eat. I went to work abroad for a few years where the diet was different. I tried a lot more things and ate very differently to home. My mum was when I got back. I think mostly though that was because when I could control my diet without pressure I was more relaxed. This is why I think your attitude of letting DS eat what he will atm will help. My mum actually made things worse

I really do believe some stomach issues are completely ideopathic. There's obviously a reason but no actual reason iyswim?