Struggling with symptoms

[Mothertay]

Hello everyone. I am new to the group but not new to systemic mastocytosis.

My skin is fairly stable although am covered with the mastocytosis rash it is generally ok. However my gastric problems are escalating at the moment. I ran out of sodium cromoglycate when there was a shortage and was off them for about 10 days before a new supply was found. Back on them now but having lots of reactions to food. Definitely egg and possibly cheese now (I love cheese 😭) often I have no idea what causes a flare up but having a reaction 3 or 4 times a week currently. Any advice?

[Mastomum]

Hi Mothertay, I too have reactions to lots of food, especially cheese. I find eating a low histamine diet as well as gf keeps issues fairly calm. So can't eat cheddar or blue or aged cheese. But I can eat feta and young mozzerella or gouda. I have an insta food account if you want inspiration. @ajsdeliciousandglutenfree Also am more likely to react when pollen count high. Hope this helps. X

[jfmmc76321 in reply to Mastomum]

Have you tried the Free From cheese range in Sainsburys? Grated, slices and cream cheese, all made from coconut. Delicious!

[Mothertay in reply to jfmmc76321]

I haven’t but will get some 🧀

[Woodpecker2021]

You have my sympathy. I miss cheese so much. I have HATS, diagnosed end of August 20. I take daily ketotifen as that seems better for histamine reactions (I react to most smells and some food) but haven't tried sodium c. It's just trial and error unfortunately. Gluten free definitely helps and I only have butter out of the dairy group. I'm also veggie and react to rapeseed oil and any unnatural items like msg, sugar substitutes etc. Basically I only eat my own food as eating out is a nightmare unless it's a jacket potato. It's a balancing act because if you remove something then you react more if you do have it again. I guess try a very small amount of a particular food gradually and see how you get on. I haven't done much reading on desensitisation technique but there have been some successes with nut allergies so may be worth looking into. Like you, sometimes I have a reaction and I don't know what has caused it. At least you know you are not alone, there are plenty of us so welcome to this group 👍

[jfmmc76321]

I have read about a range of makeup for eye allergy sufferers - try Google. Also, if mascara and eye shadow have been around for a while, they can grow a bacteria. Also a good idea to wash makeup brushes regularly. Some eye makeup removers can also cause itchy eyes. I found the Boots cream remover very gentle. Better quality makeup are less likely to cause problems. Estelle Lauder is very good, but expensive. Good idea to have your eyes checked in case you need to use lubricating eye drops. Dry eye syndrome is very common these days.