Anyone's LOs actually been tested for lactose intolerance

[Sugarmagnolia]

DS is lactose intolerant - he's shown clear symptoms of it since he was tiny. We've tried him with dairy off and on over the last few years and the outcome is always bad but he's never been properly "tested".

He's now 3 1/2 and he isn't outgrowing it so we're seeing a dietician to check his diet is ok. She also suggested doing a controlled dairy trial - ie giving him a certain amount of milk every day for a few days up to 2 weeks - followed by having his poo and his blood tested. I'm willing to try but I'm worried that after a day or two he'll need to be back in nappies - either that or I'll be doing a LOT of washing! So I'm not really looking forward to it. I've been reading the NHS website and this is the way they test babies. But it also says you can do it by giving a lactose drink followed by a breath test. This sounds much simpler as it's a one-off and I don't know why they didn't suggest doing it this way with DS.

So I'm wondering if anyone has done this and how old they were at the time.

(BTW - I don't want to offend anyone but I'm really not interested in hearing about food intolerance testing that involves testing your hair or running an electronic wand over your fingers or whatever else it is they do)

My dd3 was tested for a lactose intolerance at 4 months. It was done with the blood wee and poo tests as youve been told. Our hosp doesnt offer any other way. We were expecting a positive result and were quite amazed when it came back ok. Have they advised an allergy test called an IgE level test, a blood test which would show if maybe your ds has had an allergic reaction to the milk as well. Sorry if you already know this, but there is a big difference between an allergy and an intolerence. If he has to go for bloods, its usually easier to do everything in one go rather than have to go back later when he remembers what happened last time. Not sure this was what youre really after, but maybe some help?

Thanks bigcar. They haven't advised an allergy test as he's never shown any skin or breathing symptoms only abdominal ones. When your dd was tested was she on breastmilk/formula/ was she on any solid foods yet? I understand that unlike an allergy test, these tests won't show anything if they are on a dairy free diet. My worry is that DS is on a totally dairy free diet and I don't know how long he'll have to tolerate it before they can get the results they need.

Dd3 was bf and had just started on restricted solids due to weight loss when they tested for the lactose intolerance although babies can be intolerant to bf too. She had the allergy test mainly because shes always got a runny nose and a slight cough, shes never had a skin reaction. Im sorry i dont know how long it takes for an intolerance to show but i would hope for your ds that its not too long. Maybe a phone call to the dietician would be an idea she should have more of an clue, is it worth his discomfort for a short time to find a long term answer?

I don't know - if we do it their way we're looking at 2 weeks of wet/pooey pants. In some ways it would have been easier to do when he was still in nappies but at the time no one wanted to know because he was sure to grow out of it!

Tbh id always thought kids grew out of this at about 5, well we were told about school age, which is pretty much open to interpretation! In my rather uninformed opinion it sounds like you need to give this whole testing thing more thought, is your hv, gp any good for a chat, any other parents at school with similar probs?

We were always told he would probably grow out of it by the age of 2. He's now 3 1/2. It is possible he could still outgrow it but less likely. The GP has referred us to a paediatric dietician but I was just trying to gather some more information before we see her. Thanks for sharing your experience though.

Hope it all works out for you

Thanks - just been told by someone else that a breath test involves the person being able to breathe into a tube for so many breaths and that it is unlikely that a 3 1/2 year old would be able to do this successfully.

Hi, just thought I would say we are going to do a lactose intolerance test on dd age 5 months, but I asked my GP the same question, will it show anything as iam BF and have been dairy free since christmas, she didn't know, but said the instructions with the test might say, I will let you know if they do.

Interesting - is that one of those york test kits? We're seeing a dietician at the hospital so any testing will be done there.

Some info on lactose tests here www.netdoctor.co.uk/diseases/facts/lactoseintolerance.htm

although it doesn't mention age at which they can be done. It sounds as though a blood test should work whether you've been dairy free or not because it measures how your body responds to lactose when you're given it. I don't think the breath test is very reliable, we haven't ever been offered any test though.

Problem is if its not lactose intolerance but milk protein intolerance the lactose tests won't show it up.

You could phone the dieticin and ask if he needs to be a on a dairy diet for the test to work.

Also once the tests are done if you give him lactase it may help him get back to normal quicker. It works for us anyway.

thanks for the link tatt

I could be wrong but I thought the breath test was pretty much the standard - I just didn't know if it can be done it children.

well lactose breath tests don't always work where is irritable bowel if there is a problem with bacteria in the intestine. But after googling a bit I think the problem with young children is just getting them to co-operate. The other tests seem to work about as well as the breath test. Giving them dairy for a time first seems to be because the more lactase you have the more you can tolerate.

I have come across some interesting suggestions that lactose intolerant people should be fine with live yoghurt and cheese. The web pages say that if you have a problem with those the issue is not lactose but fat.

Did he have a problem from birth and with breast milk?

Ask the dietician if you could give him lactase with his dairy produce. If that heped him it would suggest lactose intolernace, if not it would tend to suggest a different problem.

still having a look around at this because I'm wondering why we've never been offered the breath test. Found a review of the accuracy of GI lab tests that says

"Most hospitals offering lactose hydrogen breath test use relatively similar and standard protocols. However, there are theoretical concerns about the clinical relevance of the test. The most obvious one is that the hydrogen test identifies individuals with lactose malabsorption rather than those who suffer from lactose intolerance. In fact the majority of the world?s population have lactose malabsorption, as defined by this unphysiological test, but suffer no symptoms. For example, 37.5% of healthy Italian adults have lactose malabsorption. Before individuals become symptomatic, intestinal sensitivity to malabsorbed lactose, the presence of a specific colonic microflora, and possibly an inability to catabolise intraluminal gases, are prerequisites in addition to lactose malabsorption. Against this background it is perhaps not surprising that subjects who give a positive breath hydrogen response do not necessarily respond to appropriate dietary treatment. For example in a group of patients with irritable bowel syndrome and lactose malabsorption, symptoms subsided in only 44%.

In brief the lactose tolerance test and hydrogen breath test do not identify patients who are lactose intolerant and do not predict who will respond to a lactose limited diet. "

It was pretty rude about other GI tests too . Seems most labs don't do them well and they haven't been doing so for 10 years.

Still think its probably partly our gps ignorance but it explains why a consultant didn't bother.

Not sure what test it is, will let you know when it arrives.

This is all really interesting. Our appointment with the dietician isn't until the end of march but apparently the person we're seeing specialises in these types of problems. I plan to discuss all the different options with her.

"lactose intolerant people should be fine with live yoghurt and cheese" - the first time we really knew he had a problem was at about 4 months with one of those Danone baby yoghurts - I can't remember now whether they were live yoghurt or not. About 2 hours after eating it he started screaming. And screamed for 8 hours solid!

Before that I only breastfed for about 2 weeks then switched to formula. He reacted very badly to several formulas and then seemed "ok" on SMA gold, in that he was happy enough. But even then he was always a very "sicky" baby, always had lots of runny, smelly nappies and never slept well until he was almost a year old - coincidently around the same time we switched from SMA to something non-dairy. In hindsight I'm sure it did effect him from birth but we had no reason to suspect and just wrote it off as normal baby behaviour.

lactose intolerance is actually pretty rare in babies. The ability to digest lactose is higher in babies and then declines. Milk protein intolerance can produce digestive symptoms and is far more common. Although most babies outgrow it by 3 some never do and some take up to 5.

I don't know if taking lactase with the milk would mess up the tests but I think I'd ask the dietician. Hopefully his problem will be milk protein and he'll outgrow it eventually.

If he does show as lactose intolerant you'll probably want to geta supply of lactase enzyme. I don't know why doctors can't prescribe it but our gp says he can't.

They can't prescribe it (I think) because it's not licensed as a medicine - it's considered a food supplement.

Pretty sure DS's problem is lactose because a few months ago DH gave him some of those coated nuts - after he'd eaten several handfuls we saw there was lactose in them. the next day the nursery had to send him home because of explosive diarrhoea! But it could ALSO be milk protein.

My two year old son is going to have the Lactose Breath Test tommorrow, followed by a Fructose Breath Test next week after we were referred to the Royal Free hospital in Hampstead which is a specialist centre for paediatric Gasteroenterology.

Since having a severe stomach upset just before his first birthday, he has suffered with an upset tummy after having dairy products. We really battled with our GP to recognise there was a problem, once we were referred to a specialist it was such a relief to have someone take us seriously!

I am really anxious about the test tomorrow as he is very young, have explained to him what is going to happen but I'm know it's not going to be easy to get him to cooperate.

Good luck Susie - hope it all goes well! Will you let me know?

we're going to start controlled food trails in May (dd2 has been wheat, dairy, soya, egg and nut free for 15 months). She's got ulcerative colitis and has been through countless tests including cameras down throats and up bottoms at GOS...we were under the impression that if she reacts to dairy after the first trial (she used to react within 6 hours of contact) then the trials will stop and we'll try much later. I would have thought that if your ds reacts early on during the tests then just stop as he's still clearly intolerant...hopefully not 2 weeks of diryt pants!!!!

DS(12) has just had a biopsy which confirmed he does not have coeliac disease. The next step for him is a lactose test in April, then antibiotics for giardia (which itself can cause lactose intolerance).

Hi all,

DS had a Fructose Breath Test today, he was brilliant drank 100ml of a Fructose Syrup and then had to breath into a special machine 5 times every 30 minutes. He is booked in to have the lactose test in two weeks, when he has to drink some milk - looking forward to some explosive bowel movements.

If the fructose and lactose tests are both negative, we have been told that it's likely that the diagnosis is going to be a cow's milk protein intolerance.

Will keep you posted,

Thanks so much Susie - that's exactly what I wanted to know! If your two year old can do a breath test then I guess there's no reason why my 3 1/2 year old can't. Let us know how he goes with the lactose test.

Well, we haven't had our appointment yet but I had a phone call from the dietician saying they don't regularly do hydrogen breath tests - even with adults. So now what? Not sure whether to try and push for it when we go.