Lactose intolerance or something else??

[CocktailQueen]

Hello - I hope you can help. Am at my wits' end, and our GP is about as much use as a chocolate fireguard.

My 7yo daughter was diagnosed with lactose intolerance in Nov last year
after 9 months of a cycle of sore tummies, diarrhoea, upset tummies and
tummy cramps, happening every 3-4 weks, and she has been fine in between
times. I had taken her to the GP several times and kept a food diary but
couldn't see any links/trigger foods, but the most recent GP we saw
suggested lactose intolerance and suggested a challenge diet where we
eliminiated all dairy for 3 weeks. I did this and she was fine.
Re-introduced a little dairy and her tummy upsets started again. Fine -
lactose intolerance.

So I read up on alternative calcium sources, bought lots of Alpro soya
yogurts and dairy-free products etc - but she is still having tummy probs. For example, in an episode she will have 6-7 poos a day - not proper diarrhoea but small soft and messy, hard to wipe poos, and she's on the loo for ages each time - about 20 mins. They're v smelly too. So, she hasn't had dairy and is still having cramps and bad poos. So what else could it be? Another food intolerance??

She has just had another blood test at the GP to test for iron levels, full blood count etc so am waiting for that to come back. Have also just bought a food intolerances testing kit on t'internet - you send off a few hairs and this company tests the hairs for food intolerances - worth a go!! But it's horrible - she's missing school and after school activities, her bottom is sore and painful, and we are all getting really fed up! Bless her.

I was wondering tho if part of her problem could be constipation - when she was PT, for ages she'd hold her poos in until she had her night nappy on and poo in there... she has had a couple of episodes of constipation since but nothing major. So was wondering if her bowel has become lazy and that's why she's getting these small messy poos that take ages to come out. But these sore tummy episodes usually end after a few days with a HUGE normal poo and then she's ok - till the next time.

If you can give me ANY help, thank you. I do feel as if we have been
left to get on with things by ourselves a bit - have an appt with a nutritionist in 3 months!! - and I want to ensure that dd has actually been correctly diagnosed and that she is getting the nutrition she needs as she's growing, and that there are no other underlying problems. Sorry this is so long!!! Thanks for reading :)

the small soft poos are probably leakage from around the big one that's getting stuck or "impacted". this is a common symptom of food intolerances

are you sure you've cut out ALL dairy? I say this as mother of a child with intolerances who is constantly surprised at the things I find it in!

children with a dairy intolerance/allergy are often intolerant/allergic to soya too... so that could be the culprit?

we use oat milk which is nice.

has your GP referred you for proper allergy testing? I actually wouldn't trust anything from a kit off the internet to be totally honest with you

I also think it's wheat related and the problems is that lactose intolerance is a result of wheat/gluten overload, so whilst you think you removed all dairy she is still not much better. Wheat/gluten can also cause constipation and intermittent diarrhea - this is b/c the gut tries to recover and the next load would set it back again.
You can try and cut down on wheat and once you see the difference you might just prefer to stick to good diet to keep her healthy as most of testing leads to making them really unwell b/c the more damage is done the more likely tests will be positive - if you can hack this type of experiment.
We ditched gluten with my ds despite negative tests and it's been over 5 years now, wouldn't go back on eating for anything, not worth the pain.

thisisyesterday - thank you. I got the kit from www.testyourintolerance.com/ which has a lot of good testimonials and also promises money back if not satisfied -thought it would be worth a try.

Nope, GP not suggested any sort of allergy testing, in fact he said there were NO tests for lactose intolerance apart from exclusion diet (which we had been following). Gah.

Yep, am sure have cut out all dairy- obsessively reading labels....

Thought soya was OK??? Argh.

Yes, have tried oat milk and dd thinks it's ok but prefers rice milk.

What next??!

Nightcat - thank you. Have been hoping the prob is not with gluten/wheat as that makes up a lot of diet. OK. May try excluding it and see how we get on. What happened with your dc to make you think they were wheat/gluten intolerant?

Pixieonaleaf - thank you. Hav already asked the Gp for referral to dietician and have an appt for the end of May. :[

Will think about what/gluten exclusion diet. And laxatives. sigh.

I friend of mine who is lactose intolerant cannot eat Soya at all. She says soya intolerance is more common (and can be more aggressive) than lactose intolerance.

I made a GF and dairy free cake for my aunt, and both me and my son had stomach problems for a week after, my aunt suggested it was the soya based cream that caused it.

oooh cocktail queen we're in the same boat! my dd has had this since she was tiny. we too were cows milk free for nearly 3 years (until just last month) then we cut out all dairy and have now cut out all soya too. i know gluten seems to be the popular villain but its not been the case with us.

dont mean to confuse the issue but she may be intolerant to the protein in cows milk not the lactose, and the protein is very similar to that in soya.

we too experience the accidents, the diarhoea, sore tummys, spending what seems like hours sat in the bathroom trying to think things to play!
Does your dd take laxatives all the time? my understanding is that if constipation is the problem then she needs to take them for a considerable amount of time as colon/bowel/rectum etc (sorry if anyone is eating their dinner!) are so stretched from being soo full they need a chance to function properly and shrink back to normal (which again can take ages/ poss years). My dd has been on various laxatives for the last 7yrs with varying degrees of success. maybe the diarhoea is overflow (which is actually pretty damn impossible to tell)
we are seeing a paed gi consultant for the 1st time tomorrow and have a list a mile long. our school have been ace and our gp.
if i think of anything else i'll let you know!

All 3 of my DCs have dairy and soya intolerance and actually soya affects them more. Older 2 have largely grown out of it but DD2 gets horrid runny really smelly diarrhea after ANY dairy or soya.

Have you tried no dairy no soya?

He had really bad constipation as we started cows dairy, blood and all, fissures etc and I was given advice to take him off dairy which worked for a while, but then he started having lots of other seemingly minor complaints plus neuro problems that were supposedly progressive and untreatable.

I saw some research about link b/w gluten and neurology and overnight took him off gluten, the rest is history, not only he improved in ways I (or the drs who gave us that bad prognosis) ever expected, many of his neuro problems have also improved.

We have been vv lucky that I then got a referral to a top UK neuro/gluten expert who also did a genetic test and it turned out that he has gluten sensitivity gene, so he would never test positive for celiac even if I fed him only wheat.

Just search for gluten sensitivity, mindblowing stuff.

We also had a bad experience with soya, my ds wasn't keen so I thought to try it myself and made a "shake" with fruit in it and my God, I thought I was going to die, the cramps were horrendous. It taught me to make sure I try what I feed my ds.
Don't worry about calcium alternatives, it's in a lot of leafy veg and once you cut down on wheat she will absorb all nutrients better.
My ds also had a hair test, slightly diff to yours, it was for minerals, I found it very useful.
Gluten covers gut with glue-like substance, that's why it stops absorbing nutrients. Also, once gluten out of the way, you will find that she won't need laxatives, coz it's gluten that slows down the passage of food in the gut.

Sunshineandshowers, thank you! How did you get a referral to a GI consultant? persistence? Our Gp has been pretty much useless. And what do you use instead of dairy and soya for eg yogurts, spreads, calcium??? We've never used laxatives as GP says she's not constipated... Pls let me know how you get on with the consultant.

Prairiedog- thanks. Haven't even heard of soya intolerance up to now! But what can I use for spreads, yogurts etc if I cut out both??

pixie, i'm aware that allergy testing won't help if it's an intolerance. but it MIGHT be an allergy!
although the symptoms point to intolerance rather than that. I think it's also fair to say that allergy specialists (round here anyway) are very clued up on both allergies and intolerances, so if the OP gets a referral it may be a chance to speak to someone with a lot more knowledge on the subject

bloody mindedness CQ i'm afraid. we were with a paeds consultant since she was baby as gps couldnt prescribe the higher dose of laxatives that she needed. We've seen them every few months (sometimes sooner if needbe) and seemed to keep on top of things. until the last 6 months or so. And its purely cos she is sooooo exhausted and fed up (saying she didnt want to be here etc) that i got a bit stroppy and almost demanded a 2nd opinion. paeds con then admitted struggling with diagnosis so referred to paeds gi.

Oat milk "Oatly" and the chocolate one is lovely
rice milk, not so nice
vitalite spread is both dairy and soya free
Know you can get yogurt maker - maybe use the oat milk? coconut milk? and same for making ice cream?

havent worked out cheese/yogurts/ice-cream! but we live remote so choice is very limited. Have calcium supplements from gp - either calcium sandoz liquid or calcichew tabs.

got given a few choics today but still talking them through with my dh. will post back once have our heads straight!

Hi SandS - thanks for your update. What a nightmare for you- it's been tiring and depressing for us and it's only been a year. Thanks for the tips. Take care.

am back! ok, we are being referred to the surgeons for a colonoscopy and several full thickness bowel biopsies. hosp have decided totally unrelated to milk/soya intolerances and are now looking for another reason - hirschprungs (it seems).
have had wonderfully happy girl though since thursday pm who can eat anything she wants! what a difference - we went to tesco on the way home from the hosp and could buy things without looking at labels! AND she could pick ANY of the easter eggs she wanted! honestly she's probably eaten more in the last 48hrs than in the last month.

finding it quite difficult to adjust as for the last 7 years i have had it drummed into me that "childhood constipation is very common". now am being told my dd2 is really very unusual, perplexing and they dont know what is wrong or what is the best course of action after biopsy and colonoscopy.
trying to take it day by day at the moment as she is just sooo happy about her diet being "normal".

Cocktail I notice from one of your postings that your DD prefers Rice milk. My DS dietician had advised us not to give Rice milk to him because it is known to contain Arsenic. I haven't looked into the research but that what she says. Just wondering if that could be causing her tummy pains etc. Might be worthwhile persevering with oatly for a while longer.

Also agree with the soya intolerence suggestion as it could be a milk protein intolerance as opposed to a lactose intolerance which is different.

Just a thought

Celestial - thanks. The amount of any non-dairy milk dd drinks is miniscule but thanks for the warning re rice milk. My Gop told me not to worry about trying ti find out if it was a lactose/milk protein intolerance - !!! - as it would be pointless - !!! Think I need a referral to a specialist. Is this easy to get??

Sunshine and s - wow, what news. I hope you get some answers soon. Am not surprised your dd is enoying eating what she can!!

My Dniece (5 months) has been diagnosed with food intolerance, and is intolerant to dairy and soya. According to dietician, the two are often linked. Symptoms for DNiece include tummy pain, loose stools and then huge poos, and lots of wind.

Dietician explained that dairy intolerance often starts out as linked solely to dairy, and then as intake of soya increases, the body becomes intolerant of soya as well (?).

DSis got referral to dietician through HV - she recommended DSis to dietician, DSIs went to GP and GP referred to dietician and paed no problem. DSis now drinks oat milk, uses vitalite spread, and bourbon biscuits are also dairy and soya free!

Have to say paed was very unhelpful - told DSis there is no such thing as a dairy intolerance in a BF baby - but dietician very useful.

Also interesting is DSis is intolerant to gluten but not coeliac, and DBil is lactose intolerant - not sure if intolerance can be a genetic thing?

Hope your DD gets some relief soon, sounds awful for her, poor girl.

My DD1 had multiple food intolerances as a baby, and is still lactose intolerant.

Can you ask for a referral to a paed and get them to do a poo test for reducing solids?

That'll tell you I think, from memory.

She was intolerant of dairy (lactose), wheat, soya, egg, gluten and something else I can't remember - there were six things.

hello cocktail...did the kit "testyourintolerances" work???