Has anyone heard of a milk allergy only with heated milk??

[Chocamochalatte]

DS suffered severe reactions from months old until around four or five, they were in fact anaphylactic shocks, he couldn't breathe etc, he suffered reflux and had various tests including a camera inserted but all were inconclusive...

The only link was always milk, but the reactions were never consistent, I have always felt it was to do with heated milk as on cereal etc was normally fine.

Now obviously as he's got older he's had less heated milk, (I should add milk in tea always fine) then this evening, now age eleven he had a bambiccino thing to which he has described the same symptoms as the last time, (he doesn't remember any of this ever happening before, that's how long it's been...) He says it feels like there's something stuck in his throat, that it's 'tight'

I can't find anything that suggests heating milk causes an allergy, infact just the opposite...

Does anyone please have any ideas? I got so worried when he was younger as he had these reactions but doctors never experienced it and got so paranoid about taking him in but it was always so frightening :(

TIA

Afraid am new to the allergy world but found the Allergy UK helpline really helpful. You have probably spoken to them already but if not, they are definitely worth a call. Good luck - it sounds like you've had a terrifying time!

Choca - that sounds pretty scary and quite odd. As you say, its the usual view that heating protein causes it to become less allergenic. But the world of allergy research is fairly new, so maybe the protein just changes into a form that your DS, unusually, is allergic to? The other possibility is that the heating causes the protein to concentrate (the scum/froth on the top of the milk), so even in its changed form, its concentrated enough to tip your DS's system over the edge.

Either way, he's definitely very allergic to something, so I think he needs to carry around piriton and epipens if he doesn't already? Allergy UK and the Anaphylaxis Society (if you haven't used them before, sounds like you might have needed to!) are pretty good resources, maybe they'd have more ideas?

I've never heard of allergy uk, we've never been given epipens etc, the doctors ran a couple of tests (camera / ECG) then because they couldn't find the cause gave up telling us to record the next attack (wtf??) So we kind of dealt with it ourselves. It's nowhere near as bad as it was, he still has a reaction but nothing like when he was a baby, the reaction he has now is that his throat hurts and feels funny he says...