Dairy Allergy - Not Trusting The Nutritionalist Advice - Goat Cheeses ??...

[RockinHippy]

We are still waiting for the full blood tests back, but after a couple of weeks stay in hospital with a very ill DD - diagnosed with an EDS related intestinal blockage & what they say is "Allergic Collitis"

DDs blood showed Ig of 3,500 & they say it should be 10, so she's very allergic to something - so I've been told to keep her off dairy & soy pending the full results

The nutritionalist came to see us for dietary advice, but I was quite shocked that some of her advice was just plain wrong - we are very healthy eaters & I'm pretty knowledgable on food etc & generally cook everything from scratch - she insisted that Mayonnaise contains diary - even when I argued that it's basically oil & egg, she tried to convince me that bottled Mayo contains diary - I've since checked & I've so far not found one that does.

SOOooo - I'm not trusting her take in goat/sheep milk products either - she insisted that ALL milk products of any kind are dairy - I know from times I've eaten a cleaner diet - cows milk products were considered to be diary - goat sheep etc where not & where okay.

But obviously as this is an allergy & not just a detox/healthier diet, I want to be sure

So I'm asking all of you who are more experienced in this - If you have a diary allergy, can you eat goats or sheep cheese ???

TIA

Often people with cmpi also cannot tolerate the similar proteins found in sheep and goat's milk.

The protein in cow milk is very similar to that of sheep and goats milk so risk of cross reaction is very high. We were also advised to avoid all milk, and when my DC tried goat's cheese, he reacted as he did to cow milk.

maybe it is true for those with much much milder reactions than your child.

my ds is only intolerant to lactose but can tolerate goats cheese. however, there is a world of difference between intolerance and a full blown allergy.

interestingly, I have seen jars of dairy free mayonaise in my local supermarket so it could be interesting to compare it with typical mayo to see whether it is different or whether it is just a bit of marketing.

hope everything improves for you all soon.

Mayonnaise is supposed to be dairy free, it's made from eggs and oil...

Classic mayo is dairy free, but some mayos do have dairy - bizarrely, some of the reduced fat mayos have cream added.

Anything squirted out of an udder or teat is dairy. Including cow, sheep, goat, donkey, whale milks. Some milks are better tolerated than others. Some people will not tolerate any.

Allergy is different to intolerance, allergy is a reaction by the body's immune system, intolerance is not. Either can be mild or severe, but allergy tends to be a faster reaction than intolerance (seconds or minutes rather than hours or days) and allergy has the potential to become life-threatening, whereas intolerance is unlikely to become life-threatening (even though it can be extremely upsetting) .

Allergy tends to be a response to the milk proteins. Intolerance can be a response to any part of the milk. AFAIK the two constituents of milk that cause reactions are the protein (casein) and one of the carbohydrates (lactose). Lactose intolerance can be dealt with by adding lactase enzymes to the milk (Colief drops) and by eating products where the lactose is already reduced, such as yogurt and hard cheeses.

Not all milk proteins are the same, and people with CMP intolerance can sometimes tolerate the milk of other species, eg sheep and goats. Buffalo milk is even better tolerated (I've only seen it in the form of mozzarella, though). Guernsey cows have a different form of casein to conventional Hereford/Holstein cows (the main dairy herds in the UK) and CMP intolerant people can sometimes consume their milk. But it must come from 100% Guernsey herds, and not be blended with other milks.

Hope yourLO gets better soon, and that a good exclusion diet helps her.

SixImpossible said pretty much what I was going to say.

DD2 is allergic to dairy and we were told emphatically by her paediatrician and dietician to avoid goat/sheep/etc/etc milk as the similarities are too great. The dietician did mention in passing that often when children outgrown dairy allergies they can tolerate some of those milks easier/sooner than cows milk.

Was the person you saw a nutritionist or a dietician? As far as I know (not in UK so may be different there) pretty much anyone can call themselves a nutritionist whereas a dietician is a more regulated profession. Was she sent to you specifically for allergy advise? If so, I'd be very wary of what she tells you - in comparison, DD2's dietician would have said: "X product is usually dairy/egg free (we have 2 allergies to deal with) but you should check the label to be sure, and by the way here is a list of other things that dairy can be called on a food label".

Many mayos not all are dairy free. The only dairy and egg free one I ever found was a soy based abomination that nearly made me throw up.

The dietician is correct and giving very standard advice for CMPI/A individuals.

I misread the OP, I thought the dietician had said goats milk etc was ok - which is why I said to be wary. apermanentheadache is right - avoiding all forms of animal milk is standard advice.

Our son has a dairy and egg allergy. They are very closely linked so this might be why she's saying avoid mayo - because the egg may also cause a reaction so it's best to be cautious until the test results are known.
And yes, I agree with the other posters - the main problem in dairy allergy is the Cow's Milk Protein and it is very similar to the one found in sheep and goats milk, so avoid them too.
Apparently there has been success with camels milk but I don't know how near it is to being widely available.
Hth.

SixImpossible, it's fascinating to hear about the Gursney cows! Wow! Have you tried it on your CMPA child? Where do you buy it from?

Luckily there is a farm a few minutes drive away, that sells single-herd, unhomogenised, Guernsey milks and creams.

My dc have been dairy free for about 6y, apart from occasional challenges, and I'm fairly sure they have outgrown the intolerance. When I challenged them one never responded to Guernsey milk or buffalo mozzarella, but did respond to ordinary milk. The other responded to all dairy at first, but no longer responds to Guernsey, buffalo or goat. I shall try them on regular cow milk again this summer. Fingers crossed!

BTW mine are CMP Intolerant, not allergic.

I thought a2 milk was from Guernsey cows?

SixImpossible, thanks! My DD is intolerant too (delayed reaction), not allergic

Just copying over from Dr Adam Fox (from the mumsnet site)

Q. PrettyCandles: What do you think about Guernsey milk and the theory that the form of casein it contains is less intolerable to humans than the form of casein in Friesian and Holstein milk? (For the benefit of other Mumsnetters who may not know what I am talking about, almost all dairy-farmed animals produce milk in which the beta-casein is predominantly A2, except for Friesian and Holstein cows, in which the nsumption is of A2 beta casein milk.)
My brother was a typically sickly, snotty, asthma-y, weedy kid in the 1960s and 70s. As an adult he realised that milk made him ill, and cut it out of his diet. He is now a farmer and has access to unhomogenised milk from a single herd of pure-bred Guernsey cows, and has discovered that he can safely drink their milk with no ill-effects, whereas 'conventional' milk still makes him ill.
I would also like to know whether, for someone with a dairy intolerance that is quality-of-life-affecting, rather than life-threatening, it is better to totally exclude dairy products or to consume them only in amounts that are small enough not to set off a reaction.

A. Adam: My experience has been that if your immune system has a problem with milk ie you are allergic, then it doesn't matter where the milk comes from, it is still a problem. Virtually all milk allergic kids will also react to goat/sheep milk. Very occasionally, I have patients who can tolerate specific milk-containing products yet react to others. This is most likely related to them having a problem with a specific milk protein that is not found in that product due to the manufacturing process. This may explain your brother being better with one milk rather than another.
As a rule, with delayed milk allergy (where there is no risk of anaphylaxis), if you can tolerate small amounts of milk without symptoms then there seems to be no harm in having them, but there is nothing to suggest that this would help you outgrow the problem.

I spoke to a nutritionist when I was expecting for advice on diet as I am lactose intolerant. She was VERY ignorant. She told me I couldn't be lactose intolerant as a) I had not been diagnosed by a Dr and b) that I was OK with yoghurt and most cheese but not any milk. I looked this up and it is a fairly classic lactose intolerance which is well-known. Mine covers any variety of milk - goat, sheep, buffalo included. However, I have a friend who is specifically cows-milk intolerant and he can tolerate buffalo milk quite happily.

It sounds to me as though she doesn't know what she's talking about and I would avoid ALL dairy at the moment, although goat and sheep might be something to try at an earlier stage if trying to reintroduce at any stage.

Nutritionist is not a protected title- anyone can declare themselves one. There are lots of schools offering scientifically dubious cod nutritionalist degrees. Dieticians are different. That's a protected title.

Adam Fox doesn't differentiate between allergy and intolerance. I don't pretend to be an expert. All I know is what I have learned from my own investigations to help myself and my dc. My understanding is that there is a difference. My dc are CMP intolerant (and, as he says, one reacts to all milks, the other does not react to Guersney milk).

Some people who do well on diets that avoid cow milk but allow non-cow milk may actually be CMP intolerant. I'm not suggesting the OP's dc should consume any dairy (the 'nutritionist' got that right, at least) but trying to explain why non-cow milk might have been allowed on her diet.

Six, thanks! When you say your DC has cows milk intolerance, what are the symptoms? I ask because my DC does not show up any reaction on skin prick test, but after consuming milk, comes up with a rash on her face after 45 minutes and is very very upset. In just wondering if if is worth while trying the Gursneys milk (and I would love to have milk!)

My dc had reflux as babies. They were breastfed, and as soon as I started giving them ordinary cow milk one would vomit it up within 20minutes, the other kept it down but had terrible stomach cramps, dreadful diarrhoea and bleeding nappy rash. I thought at first that they were lactose intolerant, like me, because they had been ok with yogurt and with hard cheese. So I continued bfing them and giving them yogurt and hard cheese.

When they were older, I cut out dairy completely. Only then did I realise what their symptoms were: eczema, asthma, catarrh, glue ear, rashes, reflux. These all cleared up within weeks (the asthma and glue ear took longer). Now, when they have too much dairy, or the wrong sort, the first symptoms are reflux, catarrh and dry scaly skin.

Only one has been prick-tested, and they did not react to it.

Oops, sorry for the hijackRockin.

Wow, thanks for all of the replies, makes for some interesting reading

Classic mayo is dairy free, but some mayos do have dairy - bizarrely, some of the reduced fat mayos have cream added

Thanks Six that explains it then & gives me more faith in the Dietician - we never buy low fat stuff, as I personally find it's usually full of rubbish & mostly a waste of time, so hadn't thought to check those - though she never mentioned low fat stuff, just insisted Mayo contained diary

& yes, it's an NHS Dietician - rough few weeks, so I was having trouble word finding & made a mistake

& if it is dairy, it's CMP, not lactose intolerance,

though I'm still not sure, as when I asked how the actual tests worked, eg: would it make difference to the blood test results that DD would not have any dairy & very little wheat in her system as I'd taken her off it when her stomach started to play up a few weeks earlier - I always take her off hard to digest foods with an IBS flare as realised a long time ago that it helps things settle down again. - I got different answers from different doctors though both insisting DD would have it in her system, even though I knew she hadn't eaten any in over 3 weeks

Would anyone know how the lgE blood tests work ?? - do they add CMP to the blood to get a reaction ? Or does it only show up if she's eaten it more recently ??

Got to admit I'm more inclined to think it's egg - we were struggling to find food in the hospital - they weren't providing anything she could eat , so I was hitting the cafe salad bar & they had hard boiled eggs, which DD had a real fancy for & ate much more of those than usual - she gets egg in some form for breakfast every school day too - but hospital have insisted that she cuts out only the soy & dairy until we get the rest of the results back -

coping okay - bar when she had her picky eater friend stay over at the weekend - I usually just give in & give them pizza & veggie hotdogs with carrots & fruit, as it's all the friend will eat that's non meat & suddenly realising where they hide all the whey & soy - eek

I'm really missing soy more than dairy though, not been able to use soy sauce, terriaki etc has really made a dent in our favourite recipe list

Shame the Dietician is right as regards all milk products though - DD is missing cheese, when well she snacks on it quite a lot, though more low lactose stuff & a bit of buffalo Mozzeralla or feta would have made it easier:(

Forgot to say, the hospital said to see how well she is without dairy & soy - she's getting better from clearing the blockage that put her in hospital, still on movicol etc, so not sure how we are meant to see a difference & know what's helping her - she's still getting other aches, pains & headaches etc but she has EDS & skin rashes have always been down to additive intolerance anyway

Has she been tested for coeliac?