Looking for more info

[Sophie1811]

Hi All,

I was diagnosed with Urticaria Pigmentosa as a child over 20 years ago now! To be honest, I hadn't thought much about it until it came up in a conversation about allergies today with my parents. I must say, I feel as though I've forgotten a lot about it! Decided to read up and see where it is at today and clearly there is a lot more info than I ever had. But my question is, although I appear to have grown out of UP, as commonly found in children, is it possible that it can 'come back' in adulthood or present systemic symptoms perhaps I didn't connect? I ask because I am very sensitive to a lot of products and foods and wonder if it's connected. Any help or a pointer in the right direction would be wonderful! Thank you so much

[Kay-UKMasto Ambassador]

Hi Sophie. I'm not an expert on these matters (my mastocytosis was only diagnosed as an adult, when it became systemic, though I must have had urticaria pigmentosa for some years without knowing what it was) but I recall hearing that there are some types of mast cell-related conditions which children do "grow out of" but I don't know what the incidence of subsequent masto-related conditions might be. Sensitivity to products and foods sounds to me like it could be connected but of course the only sensible thing would be to seek medical advice and possibly get a test for blood tryptase (if it is raised it could be a marker for mastocytosis). Best of luck and let's hope someone else here can throw more light on this.

[Sophie1811 in reply to Kay-UKMasto]

Thank you so much for your reply Kay! Yes, mum was always told it was most likely I would grow out of it and my pigmentation has all pretty much gone now. I think you're right, definitely worth checking in with a doctor

[Jess-UKMasto Partner in reply to Sophie1811]

Hi Sophie, and welcome. As Kay says, it would be good to have an appointment with a doctor experienced with mastocytosis to discuss your sensitivities that you still have as it would be helpful to know whether, for example, you still might want to be carrying an epipen. About 60% of children with mastocytosis do outgrow it (losing their spots) around puberty, and the other 40% don't. There isn't research that I've seen about whether that 60% are fully finished with anything mast cell related or whether they might have some stealth (or not so stealth) symptoms. I have met a few people whose pigments were fully gone but had symptoms that seemed to be mast cell related as an adult.

[Sophie1811 in reply to Jess-UKMasto]

Thanks so much Jess. My skin has cleared up now apart from one very faint area on my neck but I'm definitely going to see if I can explore this more. Mum was only really told that I would most likely grow out of it and actually, we never even knew it had anything to do with mast cells or allergies until I googled the other day, so lots to learn! Really appreciate everyone here being so helpful and willing to share

[Jess-UKMasto Partner in reply to Sophie1811]

Good luck in your exploration!