Heather’s Story

I am 59 and I was diagnosed with urticaria pigmentosa in 1985. I was given PUVA treatment which made little effect on the UP other than to make me sensitive to florescent light for about 48 hours.

I have had episodes of classic migraine (headache, flashing lights, noise and sickness) which I thankfully no longer suffer from. I have episodes of yawning, feeling very cold and tired, sometimes being sick (if sick my face swells up), sometimes just being sick usually with face swelling. When this happens I usually sleep for several hours. My face and mouth have on occasions swollen without the other symptoms. I get stomach cramps, bloating and diarrhoea, and sometimes just feel ill. I also flush under stress.

About five years ago I was generally feeling ill a lot of the time and went to see my GP, who sent me to see a doctor at the Dermatology Department in a local hospital because she thought a lot of the symptoms I was having could be linked to the UP.

I was then sent to a gastroenterologist, who carried out an endoscopy biopsy and found that I was a coeliac. I have been on a gluten-free diet since then. While having the endoscopy I had an allergic reaction, and my face swelled up closing one eye completely and the other partly – it took about four days to go down. I was given injections at the hospital but I am not sure what they were. I also went to the Allergy Clinic, where it was found that I had high levels of tryptase in my blood, which I was told indicated a high mast cell load in my system, but no skin prick allergies were found. At that time a skin biopsy was taken which confirmed the mast cells in my skin, this was taken using a local numbing agent to prevent an allergic reaction. I take sodium cromoglicate capsules and fexofenadine. I have had bone density scans (for the coeliac condition) and they are normal. I also suffer from geographic tongue which was diagnosed at the Dental Hospital at the same time. My specialist followed up all the various symptoms I had. I go to the hospital once a year for the coeliac condition, but have been signed off from Dermatology.

I have never met anyone with Mast Cell Disease, and do not know if my symptoms are typical.

[urticaria pigmentosa, UP, tryptase, skin biopsy, UV treatment, gastrointestinal symptoms, coeliac disease, adult]