Baby and mum told to go dairy free for 6 months without allergy diagnosis

[Kl1234]

I've just been to the GP for baby's suspected CMPA (delayed/non-IgE) and I've been told for us to both stay on a milk free diet for 6 months before we can have a paediatric referral. No confirmation that it is actually CMPA before we do this for almost her whole life over again (she's 8 months). No dietary advice given for me or her just off you go come back later. Is this the same for everyone? This feels dangerous

I suspect GP wants to know if the same symptoms exist even if you’re dairy free, suggesting it could be something else. Usually you go through the process of elimination first. But 6 months is a very long time.

Testing for none IGE food allergy is to stop the food for 6 weeks and then have it again to challenge to see if there is a reaction.

How old is the baby? If under six months all a dietitian will tell you is you need to make sure you get enough calcium. You also need to make sure you’re getting enough vitamin D and idoine.

50% off babies with cmpa are also allergic to soya so be aware of this.

I certainly didn't have to wait long to get my daughter to be seen by dietician and allergy team

That*

She's 8 months old. So we are just weaning. I had hoped to move her onto formula but will have to stay BF for her milk now. I also read 6 weeks and with a dairy challenge. I'm thinking I should go back if we still haven't seen an improvement in symptoms by then? We could be missing something else surely? Should I be getting a second opinion somewhere?

This may be out of date as nearly 20 years ago now, but we did the same thing when my son reacted to dairy when he first had it as an older baby. We followed advice to avoid it for a year and then try again - I think on the basis that it is an allergy that's commonly outgrown. I bf during that time and went dairy free myself and he was fine a year later. I'm not saying you should do that just because that's what we did, just saying it's not unheard of as an approach.

If it's a non-IGE allergy they can't test for it anyway, the only way to know is through elimination.

If its an IGE allergy you can test for it but the test results arent super reliable at that age but im assuming it's not an IGE allergy because you would have noticed immediately when feeding him dairy.

There are diary free milk options for babies - I am 20 years behind the times so won't advise on types and brand but you should be able to give up BF if you want

Similar to @SerendipHills when DS was a baby 20 years ago we were told to avoid dairy and DS was then tested at about 2 years, as was told testing not accurate before then. Was prescribed special formula which we used for weaning but DS hated it. When tested in the hospital when he was two he had grown out of it

I think it's normal not to have an allergy diagnosis in this situation - quite often this kind of allergy wouldn't come up on a skin-prick test, so there isn't any way of getting it diagnosed other than to eliminate dairy and see what happens. I think they only refer for skin-prick tests nowadays if they think there is a risk of anaphylaxis, it's unfortunately quite a high threshold.

Six months does seem a long time though. Back when my child was young I saw a very good allergy specialist privately and she said to cut out dairy for 12 weeks, which was longer than the GP (who said 2 weeks!). I'd say it took around 8 weeks to see any improvement at all and then over the next few weeks their eczema gradually faded away completely. If you see no improvement after 12 weeks I'd probably go back to the GP as six months is a long time to suffer if turns out to be something else!

The other thing is that you absolutely should have been referred to a dietician for advice on nutrition. I'd go back to the GP and request this. The alternative is to speak to someone privately - it's probably about £70 for a session so not as much as most other private healthcare. You can find a qualified one here: Find a dietitian - British Dietetic Association (BDA). While you wait, the main points are:

• For you, use an alternative milk that has iodine and calcium added - these are the key nutrients we get from dairy. Oatly are a good brand but check the ingredients on any brand.
• For your baby, the milk alternatives recommended (this info is maybe 2 years old so I doubt it will be very different!) are Oatly Barista, Oatly Whole or Alpro Oat Growing Up Milk - that would be to use in cooking for your baby, and as a drink after 12 months (same as the advice re cow's milk for non-allergic babies).
• Make sure you and your baby get plenty of other protein sources - meat, fish, pulses, eggs.
• I think I got told nut butters are good for the fats.
• If you use any formula at any stage you'll need it prescribed from the GP, not bought over the counter. It will likely need to be an amino acid one like neocate, not a hydrolysed one (I think they are equivalent to breastfeeding with the mother eating dairy). It sounds like you're not using formula right now so no need to worry about this now, just to be aware for the future.

Like PP said, if you're giving up dairy most would advise giving up soya as well, because 50% of babies allergic to dairy are allergic to soya, as it's a very similar protein structure.

The Facebook group "Main Group - CMPA Support" is also good. I think I got most of my info off there before the GP referred me to a dietician, then when I did finally speak to the dietician they repeated everything I'd already learnt on there!

You might like to read the NICE guidance on the topic and then go back to the GP and ask why they aren't following it. The recommended elimination time for diagnosis of non IgE mediated allergies is 2-6 weeks not months.
https://www.nice.org.uk/guidance/cg116

My daughter doesn't have anaphylactic reactions but they are still going to test her

Are you just starting out as dairy free? What are the symptoms? Has she always had them? I would try dairy and soya free for at least 6 weeks.

What are the symptoms? DD had CMPA but mild symptoms that weren't worsening so the allergy consultant told us to keep going with dairy / milk as it could get worse. This is the current advice.

I would be really worried if a GP is trying to diagnose this as they won't have access to the latest info if it's not an area of interest for them. Have you asked them to refer you to the allergy clinic directly?

She has had constipation and eczema for several months, potentially her sleep is related (but what baby sleeps?). Dependent on a high dose of lactulose. Interesting perspective that a GP can't diagnose, I asked for the referral but that's where she said we had to wait 6 months. I'm going to see if I can go private. I'll keep up the dairy/soya free for 6 weeks and maybe we'll see some improvement by then

I think it all depends on your docs. I wasn't told to go dairy free but I had to stop all foods that had dairy for my son. It started at 6 months when he had a yoghurt, and I didn't actually get anything confirmed until he was 2.5years! I had to keep trying every few months with small chunks of cheese too

They can only test for IGE allergies not none IGE allergies.

Dangerous, how? My children all had/ have dairy allergies, none have been diagnosed. The explosive poo, projectile vomiting, excessive mucous and silent reflux was enough. The fact all this disappeared when we eliminated dairy was all we needed to 'know' I'm not sure why you'd trust a test more than your own experience.

There's nothing dangerous about not consuming the milk of a cow - unless you're raising a calf.

Thanks for the tips! I might see if I can get a dietitian. I wouldn't want DD to miss any important nutrients

Agree with PPs that 6 months sounds an awfully long time - mine are 3 and 18 months and for both of them I was advised to cut out for 6 weeks before challenging, which I think is the usual process. I don't think seeking a second opinion and citing the NICE guidelines could do any harm.

I would say though, my experience was that most GPs are pretty useless on CMPA - for my older son, who did have a dairy allergy, I ended up managing it entirely myself as getting an appointment was near impossible and pointless when I did as the advice the GP gave was hopeless. Thank goodness, he's now largely grown out of it.

The hospital are doing them anyway. They did it for my friends bairn too

Wanting her blueberry allergy testing tbf

Humans 100% do not need to get any 'important nutrients' from the breast milk of another species. There are perfectly adequate calcium and protein sources out there that don't contain dairy and I think the fact there are so many kids & adults out there are allergic to it / react badly (this thread alone has many examples) is testament to how healthy dairy is I.e not very.

My 2.5 year old drinks oat milk and is the healthiest, happiest little thing you've ever seen. I don't eat anything that's come from an animal and I look extremely healthy and run half marathons!

Maybe I misunderstood you but are you suggesting a hospital can do a non ige allergy test?