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?

You can’t test for an intolerance and also non IGE allergies also can’t be tested for but are just as serious as full blown allergies. Download the RPAH elimination diet and the other pdf that comes with it and you will
learn a lot. Basically you need to be pro active on removing items from her diet for 6-12 weeks and make notes on every symptom and food etc she eats. The symptoms she has could easily be from coeliac disease - which need a genetic blood test to have a yes or no diagnosis and then the colonoscopy and endoscopy with biopsies. Don’t allow them to go with the basic coeliac tests that’s well
known to be faulty especially with children.

my children have coeliac disease, milk protein allergy - non IGE - soy allergy which also runs alongside dairy issues too and egg and corn so I am well versed with allergists etc

It’s hard to test for non-IGE allergies (basically ones that don’t cause anaphylactic reactions) so it might be worth doing some research on that and see if you feel like any of it applies to your child.

also are you cutting out lactose or are you cutting out milk (and all related milk products) completely?
My dc has a non ige milk allergy, we have never had nhs testing as we’ve been told it’s not reliable for non ige allergies.
We just completely cut all milk products from their diet for 12 weeks, we then found we also had to cut out all soy products too as often soy can often make people with a milk allergy react the same way.
I think if you seriously think that cutting dairy would help your child you should give it a try (all milk/dairy products including things that claim to be ‘lactose free’ as that won’t help if she has a milk allergy)
but it has to be completely cut out for the gut to start to heal itself, it cant be just decreased and you have to give it the full time of 6-12 weeks to actually tell.

unfortunately I’ve found that as a parent you have to be extremely pro-active in doing the research yourself and not relying on drs etc so I do sympathise!

Agree with PP, we had similar for egg. Elimination is the way to test for it. You can’t test non anaphylactic

Try upping her fibre intake (soluble & insoluble) e.g. porridge for breakfast every day, & cutting down on other processed sugars (not just sweets but sugary snacks, drinks or whatever) & see how she does.

More prebiotics(e.g. a daily banana) & probiotics (live yoghurt, kefir, etc) may help a bit as well. Good luck OP!!

Did you know that "lactose intolerance" is actually the natural way for humans? And that those of us who can tolerate it, have a mutation?

We really don't need cow's milk.

NHS don’t test for intolerances. I have a child with lactose intolerance and I just cut it out of his diet. Symptoms like vomiting and bloating disappeared so I’m confident that he’s lactose intolerant. He doesn’t have to be as strict as someone with a dairy allergy but it’s been a battle over the years to teach him that eating stuff like ice cream and “paying for it later” isn’t worth it.

You may know this already but lactose intolerance is not the same as a dairy allergy. My son is lactose intolerant so eating Parmesan cheese (99.9% lactose free) has no effect but if he had a dairy allergy then he’d have a reaction. Remember that soy and dairy allergies often go hand in hand so note if the vegan product contains soy or not. My son is sensitive to soy so I pick coconut, almond or oat products which he’s fine with.

As your DD improved on a gluten free diet it’s quite possible she has a gluten intolerance at the bottom of all this and bacterial imbalance causing the milk symptoms

If she were my DD (and both my kids and I are coeliac) I would restart the diet she responds to, get some good quality pre and pro biotics not cheap and cheerful ones and do a gut reboot.

Even on a GF diet I still do a reboot as I have problems with dairy. Lacto free products also help as it’s usually the sugar component that causes the issue. I’m currently using Symprove which I find very effective

It’s probably not just lactose but cow’s milk protein allergy. She will need to completely cut out anything with cow’s milk in it for at least four weeks before seeing a difference, maybe longer.

Sorry you’ve had quite a few unnecessarily terse (and incorrect) responses, here.

Lactose intolerance testing is available on the NHS; my son is due to have his breath test done in the next few weeks. If gastro have discharged you, you’ll have to go back to gp again or go private, if that’s an option for you?

I’m sorry your daughter is going through this.

Thank you for all the replies. I’m going to spend tonight working out some menu plans on how to cut out lactose, dairy, and soy. Also eggs as I feel like they set her off as well.

if I notice an improvement, is it worth waiting the 12 weeks before reintroducing things gradually, or could I start doing that after 2 or 3 weeks? I’m hoping if it is an intolerance then it’s lactose as she loves cheese and egg so would like to try and introduce them back in one at a time and see what happens.

can anyone recommend probiotics that are good for children? I’ve seen probiotic drinks in the supermarket but they seem to be milk or yoghurt based, what is the alternative to these?

That’s interesting to hear, it does say on the nhs website that you can test for intolerances and I just thought it may be an easy way to get answers. But then again the waiting lists for everything are so long, maybe it’s quicker to do the elimination diet. I found the low fodmap diet difficult though as all her meals needed so much thought in advance, so the idea of more food restrictions that end again in no answers is quite demoralising. I’ll have a look into private intolerance tests

Have a look for vegan versions of the probiotic yoghurts. I’m sure actively do some vegan probiotic yoghurt drinks

I can’t comment on the best vegan (dairy free) cheeses but Lacto-free (that’s the brand name) and Cathedral City do a lactose free cheddar if cheddar is what your dd enjoys. Philadelphia do a plant based cream cheese.

DS is lactose intolerant, he developed it after a gastro virus. It was diagnosed by totally removing lactose from his diet for 2 weeks during which the diarrhoea disappeared, then reintroducing it, when the diarrhoea returned. We then tried 12 weeks without it and tried to reintroduce slowly but it wasn't successful so he just avoids lactose now. Lactofree or vegan products are good replacements for her normal milk/ cheese. Lactofree do a cheddar and a Philadelphia style soft cheese. We get vegan cakes and chocolate. DS can tolerate normal bread and normal butter.

My son is lactose intolerant. He was tested for celiacs as a child but that came back negative. He’s never been tested for lactose but we tried going lactose free and it made a huge difference to his bowel movements, flatulence and tiredness. We make our own lactose free yoghurt so he gets the probiotics without the lactose. Dead easy with a yoghurt maker, live culture sachets and lactose-free milk and very affordable.

Activia not actively

My experience with my child was that I thought he was lactose intolerant but actually discovered last year at age 9 that he has a cows milk protein intolerance. Are you able to ask to be referred to an NHS dietitian for support? I found them helpful.
We didn't have a test to confirm, it was confirmed through elimination of milk products and then his symptoms improving after some time for his gut to heal.

My son is almost 13 and has struggled all his life with his bowels. I tried everything, bladder and bowel clinic were absolutely useless and just prescribed laxatives but like you, I wanted to understand the why and the cause not just keep sticking a plaster over it. Finally found a mix of probiotic gummies, magnesium and aloe vera made him semi regular (3 times a week) and all accidents have stopped. I wouldn't hold your breath for help.. try elimination diets and supplements until you find the right balance.

My 11 year was diagnosed with coeliac disease age 10 and crohns disease just a few weeks ago. I would like to add coeliac disease doesn't always show in a blood test and if suspicion is high a biopsy should be performed. Coeliac uk is a good source of info. I take it they have considered IBD and at least done a calprotectin? I would be tempted to push for scopes to be done top and bottom. I hope you get your daughter sorted.

My DS was tested for lactose intolerance when he was a baby - it was a stool test.

Have you tried removing artificial sweeteners or food with high concentrate fructose? My daughter really improved after removing these from her diet (it’s in everything 🙈)

If you want to do this properly you really need to wait 12 weeks. There’s no point starting an elimination diet if you’re not going to carry it out properly

DS also has continence problems, and is under a pediatric gastroenterologist. I'm surprised they haven't suggested going dairy milk, as non ige milk allergies are a very common cause of intractable constipation.

DS has other non ige allergies as well, but the first step would be to trial eliminating dairy without increasing soya (ie don't use any soya containing substitutes, but no need to eliminate things your DD is already eating that have soya in). Our experience is that if you strictly exclude the food, you see sufficient improvement within a couple of weeks to be sure whether or not it's helping. It's a slow recovery, so if it does help, it'll continue getting better over the next couple of months.

For probiotics, we use these vitamins. Oddly, it doesn't seem to say in the product information anymore but if you check the ingredients label it does still contain some probiotics.

https://amzn.eu/d/1NIUhDs

We did try a separate chewable probiotic but as it didn't seem to have any noticeable benefits for DS we stopped.

https://amzn.eu/d/12C52V0