don't understand why children's hospital won't do a lactose test!

[Sugarmagnolia]

I posted this a couple of months ago: thread

Shortly after that we had a very positive visit with the dietician at the children's hospital who said we could arrange to have him tested for lactose intolerance and allergy tested as well and she would get back to us. When we didn't hear back I phoned to follow up. I was told it was back in the hands of the consultant. So I finally get through to the consultant who tells me no, the only way to do it is to give him milk to drink, at home and then collect a stool sample myself and bring it in to the hospital for testing! So we're back to square one.

Everything I've read says that the way you test for lactose intolerance is by giving the person a lactose solution to drink (not just plain milk) followed by a breath or blood test. This isn't something really controversial or obscure we're asking for so why can't a top children's hospital do this for us? I don't understand!?!

Ds had a lactose test as you describe very recently and it was dead easy for the nurses to do. They should do it for you - as you say, what's the problem?

Can I ask - how old is your DS and was it a blood test or a breath test? thanks!

He's 13. It was a breath test, and he got v bored hanging about during the half hour intervals, but otherwise it was v straightforward. He drank a big drink, then breathed into a thing every half hour. The nurses said any intolerance would start showing up after the first couple of times, and after a full morning - sorry, can't remember how long exactly - they were able to say conclusively that he's not lactose intolerant. Could not have been much more simple, and not a doctor in sight throughout. Best of luck, be militant!

My 4 month old son has been 'diagnosed' lactose intolerent. When I say diagnosed I mean the doctor gave me a prescription for SMA LF and when I said he was much better on it said 'well that proves he is lactose intolerence, no point doing any tests'. Not saying I am not ok with this (I was the one who first thought he was lactose intolerent) but just sharing my experience. Having said that, in an older child I would have thought the test would be needed to conclude LI? I mean babies only drink milk, older kids are exposed to much more food wise. I would keep pushing for the test if thats what you feel is best. I know I'm not much help...

Thanks Haribosmum - when DS was a baby that was the way things went for us as well. He seemed better on a dairy-free diet so we just went with it. But he's almost 4 now and doesn't seem to be outgrowing it so I would like some kind of confirmation that we are doing the right thing and not limiting his diet needlessly. Waiting for the consultant to phone me back again.

the problem seems to be that the breath test doesn't actually help all that much in telling you who will respond well when milk is excluded from the diet. Hence they don't waste a lot of time doing it. Offer to pay and I'm sure they'll do it for you but that isn't really going to do much for you.

Really you want to see someone who understands food intolerance. They are few and far between and there's no guarantee they have one in a children's hospital. If you can afford to pay go privately and see someone who will understand what you're on about but they won't necessarily give you a breath test.

We are in a similar position with a family member who is better off milk but no formal diagnosis. We've experimented with lactase and found that can allow them to tolerate small amounts of milk. Tbh I'm not sure if they are lactose intolerance or if they have a problem with too much wheat and that is causing lactose intolerance. I don't know a good doctor locally - some in London - so we're just finding our own way by giving and withholding food to see what works. A doctor could put your child through various tests but ultimately you have will have to do food challenges anyway.

Ok, but what about a blood test? That's what the dietician at this same hospital told me she would try to arrange. Now she's passed it back to the consultant I'm told they can't do it again. here !

getting blood out of a young child is an unpleasant process as their veins are small. So sometimes the consultants think it best just to exclude milk and see if that helps. If your child was suspected of a problem with wheat ( which can cause lactose intolerance) they'd need to do a biopsy, which again isn't pleasant. So they tend to hope it will be milk intolerance and outgrown.

I know a stool sample isn't pleasant for either of you but if it was my child I would wait until the summer holidays and get one then. However I would also want to see this consultant and have them explain to me why they wouldn't do the tests. Sounds like you're being fobbed off when you should be given a decent explanation. Maybe you should ask to see a different consultant?

Thanks tatt - it's taken us so long to get this far I'd hate to have to start all over again with a new consultant. But you're right, I do feel like I'm being fobbed off.

He has no problem with wheat but when she saw the dietician she was worried he might be anaemic and wanted to take blood anyway. As it happens we've started him on regular multivitamins and I don't think that's a problem anymore but the consultant doesn't actually know that! She's supposed to call me back this week.

it might be possible to do the blood sugar test yourself if we can find more about it on the internet. A blood sugar monitor only costs about £10 in superdrug and you only need pin prick amounts of blood. So while not pleasant it might be possible. Going to look for the test now.

according to this www.medicinenet.com/lactose_intolerance/page6.htm

and this

adc.bmj.com/cgi/content/abstract/archdischild;53/12/939

its not reliable, especially in children.

And this
www.nlm.nih.gov/medlineplus/ency/article/003500.htm

suggests that you need blood from a vein rather than the fingertip as well as an overnight fast.

Don't know why these stupid consultants can't do an explanatory leaflet describing the tests and then explaining why they do or don't do them.

How can you be sure about the lack of problem with wheat? We have been eating less wheat as I feel better when wheat free and our lactose intolerant person has had fewer problems too. Could be coincidence so I think they are probably going to have to try two weeks wheet and gluten free then add milk to their diet and see what the result is. It can be really hard to work out what the underlying issue is when there is milk intolerance.

thanks so much for the those links tatt - it's still all very confusing. One of the articles said that the hydrogen breath test is the "most convenient and reliable" although another one said that the stool test is frequently used in "infants and young children". It just raises more questions. Like, how young is young? And the consultant seemed to suggest that we would just collect the first stool sample after he drinks milk but one of the articles said that, like with the breath test or blood test, you need to collect a series of samples because there is no way to know how long the digestion process will take in any given person. This is so rubbish - why is this so friggin hard?

Well the consultant phoned me back yesterday and apparently the answer is because she doesn't have a clue what she's talking about!

Honestly, she said as much herself. She's been consulting other "experts" but knows nothing about it. When I asked again about "blood or breath tests" she said, "um, what kind of blood tests do you mean?" FFS, this is where we were the first time we went to see the consultant months ago. I thought we were making progress and now back to the beginning again! Aaaarrrggg. She's going to speak to her "experts" again and get back to me. Honestly, you'd think this was some backwoods 2-bit clinic I was dealing with and not one of the top children's hospitals in the UK!

well at least she has the grace to admit it. I'm not even surprised after our own experience with the local "allergy specialist". You could print out and post some of the web pages? Or send her the web address of the British Society for Allergy and Clinical Immunology and ask if she's spoken to someone from there.

Once you've got through this you might like to talk to the anaphylaxis campaign or allergy uk about your experiences. They both campaign for improved allergy services. Paediatricians argue they give a better service than allergy consultants but if you've experienced both (as we have) there is just no comparison.

If you could afford to pay these people know what they are about www.allergyclinic.co.uk/index.htm

Broscoff's book would be a good one for your consultant to read!

I'm not sure it's an allergy specialist that we need - I think it's a gastroenterologist or something more along those lines. But it does prove the point that paediatricians and GPs do not necessarily provide a better service than specialists!

I'd trust an allergy consultant to refer me to a gastroenterologist if needed, wouldn't trust a gastroenterologist to do allergy tests. We've seen a gastroenterologist and been advised that the problem was ibs. Their attitude was no sign of cancerous changes, here's a diet leaflet - there's the door. We've not been offered any tests for milk intolerance at all although dietary changes have shown that a major part of the "ibs" was milk intolerance. NHS would happily do invasive tests and spend a fortune on drugs for "ibs" but won't help us find out what the real problem is .

I've phoned my GP back to see if there is another route we can go down - like get a referral directly to a specialist. This is what I asked for the first time but she said we had to see a paediatric consultant first. So now i've done that and gotten exactly nowhere maybe she'll be more agreeable this time! It's a good thing there isn't anything seriously wrong with him.