To want a lactose intolerance test for my daughter?

[Gagamama2]

Just got back from my 7 year olds appointment with the paediatric gasterentoroligist at the hospital. She’s been with that department for 18 months now.

Daughter has never had what I would call normal stool movements, or very good bladder control. The stool movements are especially causing her problems, as she will often have accidents in her pants, sometimes at school which of course is very embarrassing at 7. She doesn’t seem to feel she needs the loo until it is too late. Or it comes on too fast and she can’t get to the loo in time. Often she has big sort of “blow out” poos (sorry if tmi). Not necessarily watery dhiorrea but very big and sloppy. It’s always a drama when she goes to the loo, she needs help cleaning up and has stomach pain etc. She has two brothers 9 and 6, and they experience nothing like this so I know it’s not normal.

she was on a low fodmap diet last year which helped tremendously I think. Was tested for coeliac (or maybe it was gluten, not sure if they are the same thing?) but test came back negative.

I think I notice a pattern of her getting worse when she has milk and have been trying to do a lactose free diet for the past couple of weeks. She does seem better but things haven’t been perfect…then again she probably hasn’t been completely lactose free as it’s in everything.

i told the specialist at the hospital all this and asked if she could be tested for lactose intolerance. Was told they don’t test for intolerances, only full blown allergies. This doesn’t make sense to me as on the NHS website they say you can have blood tests or breath tests for intolerances.

she’s now been discharged from the gastro department without any answers or any improvement. They offered laxatives to be taken in the morning so she can poo before school to prevent accidents at school. But this doesn’t get to the root cause of why it is happening. It also doesn’t help the tummy pains and bloating. They’ve also said to buy some pro biotics from the supermarket which I will do.

i just feel like I don’t have any answers and my daughter starts a big junior school in sept where the kids won’t be as kind or understanding as currently in her tiny infant school.

she has also complains of back pain and has done since she was about five years old. She’s mildly hypermobile. She was being seen at the physio dept of the hospital but aside from being given excersises to do (which didn’t help as she is already quite active and does things like trampolining and gymnastics) nothing else was done so we have not worked that out either. I’m wondering if it’s.not an intolerance then are the two issues linked, like with hEDSs or similar. But that’s a pretty big leap to make and I don’t have the confidence anymore to bring it up with the hospital as I think they will think I’m being a hyperchondriac.

has anyone experienced these issues with their kids? Any advice on how to move forward?

We had to have our son on a low FODMAP diet due to IBS and he was so sensitive to them we had to keep him on it for years. So while it does take some getting used to, I can now run a completely low FODMAP household without thinking twice about it.

If she genuinely benefitted from that, you’re welcome to DM me and I can share what we did food-wise to make it simple and bearable. And once she’s free from symptoms you can consider carefully reintroducing things one by one to work out the key culprits.

Low FODMAP doesn’t have to be a disaster: our son was/is a teenager and his friends loved coming round and eating the food I made. It can be genuinely delicious and once you have a few tricks up your sleeve she can eat relatively normally. My husband and I ate the same as our son and didn’t feel hard done by at all.

If this feels like too much to attempt, switching to lactose free dairy products, cutting out onions - onion powder gets into an awful lot of things - and lowering the amount of gluten might give her some simple relief. Genius is low FODMAP, Warburtons GF stuff isn’t. A lot of the supermarket own brand GF bread stuff is also low FODMAP. Lactose, alliums and gluten cause a reaction in so many people, so even just eliminating that might make things a bit better for her. And an elimination and reintroduction process, done properly, is just as valid a method of testing for intolerance as a breath test, and should show results within a couple of weeks if you’ve isolated the right things.

I had years of bowel problems with my kids when young - did you know that since hypermobility is weak muscles that aren’t supporting joints that you can also have it in the digestive system? I am guessing she has poor gut motility ie the muscles in her digestive track are not working properly. In adults it would be thought of as IBS.

Don't cut everything out at once as you won't know which one is the culprit. Cut out one food at a time for at least 4-6 weeks. Then reintroduce to see what symptoms go/come back. If no difference, then move on to eliminate the next item

Have you considered Ehlers-Danlos Syndrome (EDS), particularly the hypermobile type (hEDS) or Postural Orthostatic Tachycardia Syndrome (POTS)?

Im wondering because you mentioned the hypermobility.

Our dietician recommended Biogaia probiotics, can get then on Amazon but verify it's from the actual Biogaia store.

Allergies very much run in families, speak to your parents, siblings etc to see of they have any. My girls both had cmpa as babies but gradually worked their way out of it with help from an excellent dietician (Tanya Wright, she does private online consults, although we were lucky enough to see her on the nhs), and DD2 recently diagnosed as coeliac. DH is coeliac and dairy intolerant.

I’ve put AIBU. My daughter is hyper mobile and so am I. Your GP would normally need to refer for allergy testing.

My daughter (just turned 16) has always struggled with her bowel performance and urine continence. When she was your daughter’s age she would often have wee accidents especially when laughing because she couldn’t feel the urgency. She has not had bowel continence issues but struggles with IBS type symptoms where she will be constipated for weeks and then have days of ‘messy’ poos. She has some hypermobility and query autism. Now that she menstruates the issue is further complicated because the symptoms are worse when she’s on her period so we had to get a hall pass so she could ask to use the toilet when she needs to rather than waiting for the end of lessons. She also cannot ‘feel’ her period so is prone to leaks but on the plus side no cramps. There is a type of mild spina bifida which can cause a lack of sensation in that region but doctors ruled that out for her. I’ve not looked into dietary things but I don’t believe there’s a correlation. She’d be gutted if there were - she loves milkshakes and ice creams. We saw a physiotherapist who explained about how the brain works around continence issues and gave her some exercises to try to train her brain to be more responsive to signals around needing to use the bathroom. She said there is a link between hypermobility and autism spectrum and these can cause looseness and joint and muscle issues. She said she is very loose around her hips. We have further urology tests coming up. The physio talked about how certain bodily changes eg hormones, stress, high sugar, caffeine can irritate the bladder and increase the issues. She never really talked about diet and nor did the GP. When she was a baby and started solids she didn’t have a firm poo for months and I took her to the GP who told us to give her bananas! That was BS. I did my own research and found that for some children their guts are a little slower to develop and struggle with a diet that’s too ‘healthy’ and need higher fat so we gave her more chips and pasta and she was fine after that. But the low sensation and continence issues have persisted although improved as she found coping methods. Sorry, not sure any of this is useful insight, but just thought I’d share as it sounds similar.

OP

Do you really need a test? I'm fairly sure I'm lactose intolerant but I have never had a test.

I can tolerate some dairy, particularly with other food. So a Yorkshire pudding with a roast is fine on its own not so much. Cheese I am usually OK with.

You can also get lactase drops.

Sorry but non IgE allergies and intolerances are NOT as serious as IgE allergies. My son has both and there's a stark difference between getting the shits and going into anaphylaxis.

@Gagamama2
Sorry if this sounds a little tmi, but we have lots of (diagnosed) lactose intolerance in our family, including me. There is something that can give you a clue. If lactose intolerant, it’s obviously due to the lack of the lactase enzyme in the body, what that means is that the sugar (lactose) will come out in the stools, in which case there will be a very strong sugary, sweet smell when she poos after consuming milk. Cheese, butter etc contains much less lactose so will not be as noticeable and won’t cause the same level of diarrhoea, pain etc, but the sweet smell will be much more noticeable after milk, cream etc.

Just wanted to see how you go on with this. Currently going through same thing

Sorry you are going through the same thing, it’s so frustrating.

things have improved somewhat, she is now 8 yrs 2 mths and is having a lot less accidents than at 6/7 yrs. we got nowhere furthur with the hospital but as things seem to be improving I have stopped pushing them for stuff. In the end, I don’t think it was an intolerance, although I do think the lowFODMAP diet helped her gut cope better. If you read the replies above from SENneeds, Zorro and MyProperTea I think it was more down to everything they were suggesting - hypermobility affecting gut and needing her to grow a bit older for it to get stronger, some possible Ehler Danlos Syndrome and possible autism although have not attempted to get to the bottom of either as am eyeballls deep in fighting for her 2 x siblings adhd assessments 🫠.

hope you get to the bottom of it your end x

It takes at least 6 weeks to get out of your system so leave it 12 weeks

If you think her symptoms are worse with lactose then cut it out properly and monitor.

why does an official diagnosis matter?

My DC had similar symptoms, it was thought by an expert to be a combination of low muscle tone / hyper mobility, fast motility and poor interroception. Also ND.

still has occasional soiling age 9 but it's getting slowly better.

You can buy lactase tablets from holland and barret. They are the enzyme that digests lactose. If your daughter takes a tablet before she eats anything these should help. My DP is lactose intolerant. Otherwise you need to read the back of EVERYTHING and not feed her things with dairy in. You can buy lactose free milk, cheese etc.. but it's more expensive. If you eliminate lactose (or take the pills properly) for 6 weeks it should all get better if it is lactose causing the problem.

My daughter is going through some of this. Probably not as bad as we cut out cows milk a while ago and switched to soya milk.

She used to be able to tolerate dairy but would get the runs. Now she's getting tummy aches as soon as she has anything with dairy /or lactose which made her miserable.

So a few weeks ago we decided to cut out all dairy and see how she was. This was butter, cheese, chocolate and anything that had dairy /milk in ingredients etc. This has helped a lot. She no longer gets tummy aches or the runs. So looks like it is dairy or lactose.

I have got her some lactofree butter and cheese and will try and introduce a bit of that to see if it's just the lactose she's intolerant to, but for now, diary free is working.

Like your daughter, my daughter has always had problems since being a baby. Always had loose poo etc. I have taken her to Dr quite a few times , they do blood tests then say it's all ok. I guess checking for allergy rather than intolerance. So haven't had a diagnosis for her. But now think she is definitely intolerant.

So I suggest try eliminating it yourself and see how she is. It is hard. My daughters favourite foods all have dairy! But I think she's realised herself she prefers not to have a sore tummy all the time.

I’m lactose intolerant. The best way of testing your daughter is to remove every single trace of dairy from her diet. If she has lactose intolerance you will very quickly see an improvement. Then, to check, give her a large glass of milk to drink and see what happens.