to worry about people being told to cut out dairy

[noblegiraffe]

I've noticed on here recently (or maybe I've only just noticed?) that if a mother posts about a fussy baby and she's breastfeeding, it is quite common for someone to suggest the mother try cutting dairy from her diet.

Now I'd have thought that cutting out dairy should be something done carefully and with dietary advice on how to compensate for it.

If you're cutting out dairy, that means you have to cut out nice things like cheese, milk in your cereal/tea, and if you're doing it thoroughly, things like chocolate that contain milk products. This sounds tedious and not very pleasant. It may even convince a mother to give up breastfeeding.

So I would have thought that cutting out dairy isn't something that should be taken lightly.

Also, babies are quite often fussy, and they quite often grow out of it without any intervention. A mother who has cut out dairy may attribute the improvement to her restricted diet and continue on it for months despite it being completely unnecessary and making no difference at all.

It's different to when people make other suggestions on here like 'it might be reflux' because people will need to see their GP before getting a prescription, and tips like propping up the cot are harmless even if it's not reflux. People can go ahead and cut out dairy without any health professional giving it the once-over.

So, AIBU to worry about this advice being bandied about? Or do people not attempt dietary restrictions on the say so of an Internet forum and I'm worrying about nothing?

ICBINEG homeopathy, reiki, and even infacol - load of old shite. But on CMPI/A I am afraid your science is, frankly, rubbish.

I really am going now.

Oh look, there's that contempt for intolerances and allergies you were talking about. Putting it in the same category as reiki and homeopathy . That's what this is all about really isn't it?

It's not really any surprise though given how woefully misinformed GPs are about allergies and breast feeding that someone with a big standard science degree hasn't the first fucking clue.

big=bog

WTAF I have no contempt of CMPI - my nephew has it and has already suffered anaphylaxis once!

I do not anywhere compare it to homeopathy. I was mentioning those things as things that people on MN will suggest as solutions to problems as evidence that not everyone has the tools to understand medical trials or to realise that their personal experience is not reliable evidence.

If you actually read posts - it helps.

Ragusa, if you agree that a CMPI doesn't simply result in a fussy baby, then you agree with my OP that people shouldn't be coming on simple fussy baby threads and recommending dairy elimination?

Seriously I didn't say ANYTHING about CMPI.

Except that you can't diagnose it by stopping dairy and seeing if your baby seems less fussy. I think we all agree on that right?

I'm sorry you had such a bad experience icb I wouldnt wish that on anyone . People who post advice do so with the best intentions. We are so lucky to be here, if we have a question or need a hand to hold there are hundreds here who are there to do it. No one has a definitive answer for anything. We can only post what we found helped us and thankfully it sometimes works for others and honestly sometimes changes lives.

I would trust other mums over drs on nearly every occasion. Drs dish out their idea and we have to go home and hope to god it works and meanwhile deal with the fall out if it doesn't.

I get, being angry at drs for missing things , sometimes one drs opinion is what stands between you getting or not getting what you know you need.

But I don't get being so angry at people who are merely trying to help.

Maybe then you didn't get what you were looking for back then but maybe one day you will. And that's from complete strangers who sometimes stay up for hours talking to posters. Who check in on them the moment they wake up. Posters who have on occasion gone out if their way to source formula or nappies or food and driven miles to deliver it. All that while the op is still waiting on a call back from the dr.

And you know what sometimes despite science saying other wise, despite research apparently proving things, sometimes just sometimes it can actually work.

I'm
Sorry things got so shit for you, I hope they have improved and that you are happy!

In reverse to your situation, if I had listened to the drs I'd have had that year of misery too. My baby would have had medication she didn't need. I'd have spent months thinking it was all my fault I couldn't make her happy.if it hasn't been for lurking on the Internet, for threads here coming up on google, and my gut instinct that I refused to let go of things would have been alot different.

We might not always be right. We might be way off at times but so is science and the medical profession. Nothing is ever fail safe there are always anomalies.

Noble, what Ragusa meant by that statement was that the consequences can be greater than simply a fussy baby. The baby can suffer damage to their gut, restricted growth, they could go into anaphylactic shock (as one mum who posts on here's baby did) as reactions can worsen with every exposure.

ICB elimination diets are used to diagnose intolerances and allergies.

Your nephew must have CMPA as anaphylaxis is not a symptom of CMPA.

Perhaps you didn't intend to infer that advice to cut out dairy is as much pseudo science as reiki etc, but thats what your post reads as to me and I'm guessing Ragusa did too given her reaction.

*Your nephew must have CMPA as anaphylaxis is not a symptom of CMPI.

Ice - my gp said the test for cmpi was to stop all dairy and see if things are different in 6 weeks - they were. Thanks doc

I think that is the crux of it really - the only way to find out is to eliminate dairy and (if you are brave) reintroduce it. The only way of finding out if it will help your baby is to do it. So the only advice one can give others is to try it.

It would be great if there was a simple reliable lab test. But there isn't.

I'm sure if there were people would be advising others to use it.

hmm there are simple tests...but they are indeed bloody hard to get the doctors to do. Presumably because they cost so much and the chances of your baby actually having it are so low.

My problem with the 'try it and see' advice is that false positives are rife and being a parent is seriously hard at times. The more things you are doing because you did it once and it seemed to work and you can't bear to risk the backwards step can stack up and stack up....till you are exhausted with all the individually little distortions to your life that are all actually having no actual positive effect at all.

Saying, if everyone did X and it helped even one baby it would be worth it is just so very untrue. Everyone doing X even though it will make a difference to only 1: million babies is a HUGE price to pay. And some people are dangerously close to not coping at all. One more pointless meaningless intervention might tip them over.

All I would really like to see is an acknowledgement that 'try and and see - it can't hurt can it' is a truly incorrect and unhelpful statement.

In return I will and have acknowledged that I have had tremendously helpful advice on here when I was too low to access the GP.

I don't think that's the case though - as I say I had 3 false diagnosis from GPs, each time I did what the doctor advised and convinced myself things were getting a bit better - but of course they really didn't and in a few months I was back ay the Dr asking if they were sure this was normal, or asking about something else that had been suggested. If it doesn't really work you can't convince yourself that it does for very long.

Dairy-free actually worked. The very simple proof is that I am no longer washing 4-5 pairs of diarrhea pants a day. Before when I tried things I might have a few less, or some days were okay, or the poo was a different consistency but it never actually stopped the problem.

I know that is a bit different from 'fussy' babies, which is more subjective, but I honestly don't see allergy advice being given to mothers of fussy babies on MN unless they have asked. AND for me it is worth bearing in mind that those first signs of a very vomity/pooey baby weren't for DD, just in the range of normal as I was constantly told, but actually the first signs that something was wrong.

hmm there are simple tests...but they are indeed bloody hard to get the doctors to do. Presumably because they cost so much and the chances of your baby actually having it are so low.

hmmmm, no there aren't, actually. I think you are thinking of the RAST and ELISA blood tests, ICBINEG. Ask any paedeatric allergist and they will tell you that the number of false negatives generated by RAST is very high, unless the baby has a severe immune-mediated (IgE) allergy. Patch, scratch, or skin-prick testing are not usually used to identify CMPI/A.

TeWi, if you are talking about pants, then you are presumably talking about cutting out dairy for a child who is on solids.
This is completely different to advice to cut out dairy to a mother who is ebf. It's also different to advice to a formula feeding mother to try switching milks.

Remember, only 4 in 1000-odd babies in that study were sensitive enough to dairy for it to have an effect when only fed breast milk.

And maybe for you a vomiting baby was a sign of CMPI, but for most other babies it won't be. Babies vomit because the valve between the stomach and oesophagus is weak, this is common, and not necessarily a symptom of something more sinister.

And also the statistics of confirmed cases may be low. But most of us on this thread are the lucky ones. Because we figured it out. It may have taken many people months or even years but they did figure it out. There are many many more who have it except they have been turned away and told its normal for these things to be happening. They put up with months and months of hell til either the kid eventually grows out of it or the poor child just learns to deal with it. It becomes a part of life. Once the baby is past the formula stage there's nothing a dr can do. My dd 14/15 months before she got to see a dietitian. All the weaning came from me the drs had no clue at all. I didn't bother them with it. She only remained on the milk, not because her case was confirmed but because the dr at the check up felt tht as she was doing so well she wouldn't rock the boat. I coulda lost it there and then and been straight back to square one had the dr insisted on investigating further befor continuing to prescribe the milk. There are people walking around today with horrible gut problems, growth problems and all sorts of other health issues as their easy to treat milk intolerance just wasn't picked up. So statistically it's low, but there are many many more undiagnosed cases. Normalising things is what's unhelpful. Suggestions that stand a chance of working are at least something to try and something that gives mums hope that someone is actually listening to them.

There is no test for intolerances. It's try it and see. I that's unhelpful then what do you make of the " suck it and see" or "it's normal" attitude of drs.

Ragusa:
"For the last bloody time, true CMPI/ CMPA does not result in 'a fussy baby'."

Exactly - which is why "oh why not cut out dairy" is not necessarily the best place to start with a "fussy baby"

noble my DD is lactose intolerant, she has been since birth, it was diagnosed at 4 because so many people believe so vocally that you shouldn't consider a baby might have allergies/intolerances - she has been ill for FOUR YEARS because of that attitude.

She is not even that statistically rare because there is a family history and I am from a country with a much higher lactose intolerance rate than the UK.

So, actually I do feel quite cross ay the attitude that it can only be harmful to try exclusion diets with babies because it is not true - in our case DD should not have been breastfed at all and if I had had a GP who was an expert at that stage DD would gave had a vastly better start in life.

Caffeine, I am not talking about children on solids, or children on formula. Children who in their diet are being exposed to high levels of dairy. I am talking (as I thought was clear from my OP) about breastfeeding mothers being advised to cut out dairy from their diet on the off chance that their fussy baby is one of the exceptionally few for whom it might make a difference. Not simply babies with a list of classic CMPI symptoms either.

There are no simple reliable lab tests. The blood tests are notoriously unreliable. Our allergist says 'a positive is a positive and a negative is meaningless' to us.

My DD tests negative to avocado for example but is very sick and comes out in hives if she eats them. She also reacts if avocado is rubbed on her skin but her blood test has been negative 3 times.

I fail to see the harm in cutting out dairy for a few weeks. I think in a lot of cases the difference in the baby is so big that it is very unlikely to be simple coincidence.

TeWi, from what I understand, babies in the UK suffering lactose intolerance are exceptionally rare. With your background and your family history you are a special case from which blanket recommendations should not be made.

Nobegiraffe I think the number of children with some sort of intolerance is hugely underestimated - in part because there are no reliable tests.

Intolerances can manifest in so many different ways and it is pretty well impossible to make a diagnosis without doing an elimination diet.

If all babies presented typically then there would be more diagnosis of cmpi. It goes un noticed because crying is normal , endless discomfort is "colic" constant vomiting is normal or reflux if ur lucky enough that drs take that concern seriously. Arched backs are wind, no sleeping is normalised every symptom of cmpi in breast fed or ff babies is normalised by every hcp and most the people you meet.

Sure yeah some people have fussy babiesbut sometimes it's more. Babies are hospitalised before anyone takes anything seriously. And even then sometimes the parents are made out to be the problem. No one actually believes that the baby struggles.

Beachcomber, my baby had blood in her stools for weeks. I could have well cut out dairy and seen an improvement. But it would have still been a coincidence.

My DS was a prolific vomiter, I owned shares in Persil and hundreds of muslins. I could have cut out dairy and seen an improvement. That would have been a coincidence too, as he grew out of it at 3-4 months old.

Babies change quite rapidly anyway. Changes that could easily be put down to unlikely to make a difference interventions that the unnecessary intervention then claims the credit for. Babies being sensitive to dairy in breastmilk is rare.

A d actually they are "fussy babies" dd never wanted to feed cos it made her feel shit she would squirm and refuse the bottle at times. On occasion when she did drink she would start grunting and straining half way through and I'd have to try really hard to get her to take more. Of course after shed been ill and on drips and her weight plummeted the little food I did get down her did make her gain weight because she was actually eating as opposed to receiving rations or IV nutrition. So of course the weight gain meant that I was being silly and nothing was wrong and her being fussy was cos she needed more milk.