Lactose/gluten/wheat intolerance?? - lots of poos - help..........

[CocktailQueen]

I have posted earlier about my 7yo dd and her lactose intolerance but things have been getting worse. She is having 5-10 poos a day. Not diarrhoea -a 4-5 on the Bristol scale if you're familiar with that!!

But they don't give her much warning - last night she pooed her bed as she didn't wake up/didn't get to the loo in time - argh.

She's having 2-3 poos every day at school; then when she gets home she'll go straight to the loo then have 3-4 more in the ev and after she'd gone to bed she always has to get up for a poo, and recently she's been up every night for a poo too. She's on the loo for ages and poos are hard to push out. :( She's so tired of it all. :(

We saw a GP in Nov who recomended less fibre in her diet - so swapping from brown to white bread, cutting down on fruit and veg - and this made dd constipated so we have gradaually reintroduced fruit and veg. So could all these poos be a constipation thing? They can be small - tho soft - then every few days she will have several huge poos then it's back to smaller messy ones again (sorry, way tmi).

She doesn't want to go to school incase she has an accident there; she comes home with skids on her pants a few times a week (the poos are hard to wipe and messy, and there are no wipes at school).

It's affecting everything we do - went out for mothers day to local country park for a walk and she had 4 poos in 2 hours.....

She is dairy free and has been wheat and gluten free for the last 2 weeks (tho her blood test came back negative for coeliac I thought it might be an idea to try an elimination diet to see if wheat/gluten had any effect on her). She complains of a sore tummy often; she lacks energy; and understandably she is SO fed up of these poos.

Can anyone suggest anything?? Does it sound like food intolerances? Or constipation (or lazy bowel?? Can her bowel have forgotten how to push and when she needs to go to the loo?) Or IBS or something similar??

This has been going on for a year and I'm fed up too. We have a consultant referral but who knows when our appt will come through. Help!!!!

I would say there is a possibility of it being constipation overflow - especially if she is unaware of doing it sometimes.

Gluten free food is lacking in fibre, so if you've gone GF with her that could have caused her to become constipated and suffer from overflow, although overflow would normally be a number 7 on the stool scale rather than a 4 or 5.

Has the GP examined her while she is complaining of stomach pain. They should be able to identify constipation in the intestines by palpating her abdomen.

I thought my ds was just bad at wiping as there were always skid on his pants - it turned out he had really bad constipation that resulted in an impaction. He is such a stoic little chap, he'd never complained or told us how he was feeling.

IBS is also a real possiblity. A lot of people think children don't get IBS, in fact some GPs will tell you that as well, but they do. [http://digestive.niddk.nih.gov/ddiseases/pubs/ibschildren/ Some info on IBS in children here.]]

I do sympathise, we have ds2 with chronic constipation and impactions and ds1 who has had chronic diarrhoea his whole life, tested negative for coeliacs on the blood test, but the paed and dietician noted a pattern in his food diary and advised he be treated as if he has coeliacs anyway.

I would highly recommend keeping a daily food diary. Literally everything she eats and drinks, including all ingredients in home made meals such as herbs and spices - they will most likely ask you to do it anyway at the first appointment with the consultant and it saves a lot of time if you already have one to take with you. Also keep a diary of all her dietary symptoms, stool frequency and type etc. With my ds's we kept a chart with the stool scale on outside the bathroom door for them to fill in every time they went, then transferred the info onto the relevant food diary pages once a week, so that the paed could see the pattern. Without doing this, ds1 would still be eating gluten - since coming off it his diarrhoea has cleared up and he has gained in weight and height.

Agree with moose and also wanted to add that it does take quite a while to recover and also even small amount of gluten can cause problems.

Is she on any meds? Coz if so, that can also affect her. ALso, she will temporarily not absorb fatty foods, that could make those poos on the soft/runny side. Gluten suppresses digestive enzymes so you need to build it all back up and it happens slowly.

When you stop wheat/gluten, they go through detox so I'd say rice/meat/veg and generally plain-ish food (ie as little of processed as you can handle).

We also went dairy free first with my ds and realised something else was going on and then I found out that it's gluten that stops them being able to digest dairy. I was also quite worried as my ds developed new symptoms when we stopped gluten and I had thought it was all a waste of time, thankfully I kept reading about it and realised it was all as it should be and after what seemed like a setback, he got better and better

We ditched all cereals and now have cooked breakfast, we don't buy gf bread (affects me more than my ds) and I cook from scratch. I make soups as they are easy to digest, but caseroles are fine. Make sure she eats some protein at every meal and generally large variety of foods rather than gf substitutes.

Moosemama - thank you - I have booked a private appt with a paed gastroenterologist so hope he can shed some light. I do keep a food and poo diary... I don't think there is an impaction problem as she had sweetcorn the other day and it came through after about 24 hours without any problem... (sorry, tmi!). It's such a worry.

Nightcat- thank you - no, dd is on no meds. I have been doing a fairly plain diet - cheers. No probs with cooking everything from scratch! Have just started doing cooked breakfasts too as was wodnering if her oat cereal was a problem and she has been better the last few days - what new symptoms did your ds have after stopping gluten?

CQ, most oats do contain traces of gluten as they are grown and processed on the same farms and end up contaminated with wheat. Ds1's diarrhoea only resolved properly once we removed oats from his diet. We now buy the pure oats that are certified gluten free, as the one thing my ds really missed was porridge and flapjacks.

We'd never made the connection, but my dh has never been able to eat oats or pizza, however he can eat the pure oats with no ill effects and also gluten free pizza bases. He is going to go for a coeliac blood test himself soon, as if he tests positive, it will suggest even more strongly that ds's was a false negative.

It sounds like you are doing everything you can. Hope the paed manages to identify the problem quickly.

CQ, he was getting headaches, twitches and rashes and lots of fungal infections in various places and this lasted for about a year on and off, he was also tic-ing and echolalic, which tbh made me panic as it was all a few weeks into a diet and he had never been echolalic before. His liver enzymes were also low.

Zinc supplement sorted out fungal stuff in the end, as no creams worked long term (was zinc deficient), he had been self-restricted vegeterian before gf, as he couldnt chew any meat.

He is no longer plagued with fungal stuff or headaches, no echolalia and barely any tic-ing (more like blinking). He has learnt to chew properly and is eating meat (good for zinc and general protein absorption and aminoacids). But he is still quite low in aminoacids, so working on that.

Celiac is just a tip of the iceberg, you can be intolerant and the intolerance will very slowly build up and affect various parts of the body via nutrient deficiencies or autoimmunity, not worth pushing for celiac dx and getting them really ill over a long period of time - imo.

Nightcat - thanks. Your poor ds. What a lot of unrelated symptoms. DD had school dinners today- sausages and pasta - both with wheat and gluten - stupid me, didn't think to check. From being pretty good for the last couple of days she's come home and had 5 poos so I think it looks like wheat/gluten. BUT she has had 2 coeliac blood tests both of which were negative - one when she was eating pasta and ceral etc normally, so I don't think it's coeliac, more an intolerance. Will carry on with the food diary and see how she gets on.

Tests or no tests, I look at it this way: if you know what makes you ill, you can at least take steps to avoid it. After all, even those who are confirmed celiacs occasionally get caught out too.
We declined biopsy after neg bloods and opted out to do the diet, as I couldn't bear the thought of a major setback when he started getting better.

Can I just say you can be intolerant to gluten without being a coeliac - coeliacs is an auto immune disorder that attacks the gut if gluten is eaten. It is completely possible to have a range of dreadful intolerance symptoms and test negative for coeliacs.

I have twp children with coeliacs - one who never had any symptoms in her life and it was only detected in a routine blood test because she is diabetic and the other who was really symptomatic as a little one and got used to it and by the time she tested positive (was tested because of her sister and because of past symptoms) she had no symptoms either at the time - swings and roundabouts.

Both of them tested high positive on blood tests and i have no let them have a biopsy because it is unnecessarily traumatic

Thanks Pinky, that's helpful. How bizarre that your 2 kids' experiences have been so different!