Tasmin's Story

I had my first allergic reaction as a toddler. This was to an antibiotic, which wasn’t exactly unusual; however this was my first instance of any type of allergic response to a medication. I later developed issues with tolerating certain foods such as beef, tomatoes and fruits (strawberries especially). I also started to develop more symptoms such as non-contagious conjunctivitis, asthma, seasonal allergies, eczema and reactions to certain laundry washing powders. Alongside this, tree pollen and grass pollen were irritants. 

My triggers are mostly foods, hormones, and certain products which I’ve had to change due to skin reactions and intolerances, such as toothpaste, shower gels and washing powders. In addition to MCAS, I also have APDS2 and SHORT syndrome, postural orthostatic tachycardia syndrome (POTS), hypermobility, IgA immunodeficiency and asthma.

During the transition when I was developing menstrual periods, I noticed that my symptoms progressively worsened with the onset of heavy and prolonged menses and pain, along with more allergic-type symptoms becoming more persistent in combination with unexplained anaemia. I decided to seek help from a private homeopathic doctor who suggested that I seemed to be oestrogen-dominant and definitely had issues with tolerating foods with high histamine levels.

At age 18, I developed cellulitis in my face and started to get digestive upset and prolonged issues with regulating my gastrointestinal tract. I had a diagnosis of post-infectious IBS and mild colitis – however I felt mostly in the dark as to why these symptoms developed. At the time I was tolerating less food due to needing to go to the toilet frequently, so I cut gluten and dairy out of my diet as the main triggers.

I was allergic to a cat during my childhood, however I kept him because the symptoms were tolerable.

I was diagnosed with MCAS through a private appointment with a hormonal specialist initially, but I have also been diagnosed under the NHS. On my diagnosis pathway I saw a urogynaecologist (private and NHS), an NHS dermatologist, an NHS immunologist and the private hormonal specialist mentioned above.

I’ve had a mixed reaction with medical care in the sense that I was dismissed a lot at the beginning and I was told it was panic attacks and anxiety by the NHS. But I knew there was more to the issue I was experiencing, especially with many systemic problems.

For me the journey towards a diagnosis was a difficult one. Previously I had experienced mild symptoms but then in 2019 they developed rapidly out of my control which meant that my routine and life got flipped upside down overnight. The problems seemed to occur after having a streptococcus throat infection and thereafter I started to have issues with my hormones. Also, I was struggling to even drink fluids so I went to A and E a few times retching and struggling to breathe. I then went on to develop fluctuating blood pressure and so I experienced hypotension and hypertensive episodes with a diagnosis of POTS. However, I knew this wasn’t the full picture because I kept gaining weight despite eating very healthily, and I felt swollen and inflamed a lot of the time.

I had many tests for endocrine issues and I was tested for Cushing Syndrome – which I didn’t have. Finally a doctor at Barts Hospital suggested the possibility of MCAS, as did a doctor in UCLH Hospital neurology and neurosurgery who sent me as an NHS referral to Dr Grattan’s dermatology clinic in Guys Hospital. I already had an NHS diagnosis, however the new referral was because I developed breathlessness, hyperventilation, difficulty swallowing, choking episodes, angioedema, hives, acid reflux and oesophageal spasms along with many different neurological-type spasm and tic reactions. I had gained a lot of weight and I didn’t feel myself at all.

In September 2020 I had the official diagnosis of idiopathic urticaria and angioedema through Dr Grattan’s clinic. I was told that this was histamine and mast cell-driven along with oral allergy syndrome and histamine intolerance. After this I could have all of the protocol medicines I had been paying for privately via the NHS to manage my symptoms.

Prior to this I was lucky enough to have seen the hormonal specialist Dr Tina Peers privately at Harley Street, as I felt my hormones were the biggest culprit behind symptom exasperation, along with many other reasons linked to my gut. She confirmed a diagnosis of MCAS and histamine intolerance and started treatment, while I was simultaneously lucky to have the assistance of the above-mentioned Guys Hospital NHS teams providing medication and help. I had a 24-hour urine test which confirmed prostaglandins and histamine. Tryptase was elevated which helped give a clearer view of suspected MCAS.

I also saw Professor Khullar privately as I had bladder manifestations. I had three different urinary tract infections and he reconfirmed my diagnosis of MCAS.

I felt very lonely and isolated while experiencing symptoms as things rapidly declined overnight, however I’m glad I persisted and trusted my instinct – although it was difficult as I was losing weight rapidly and unable to eat fully or drink water.

At A and E I was told I had panic attacks but I knew there was more to the story, notably worsening symptoms around the time of my period

After diagnosis I immediately started on a low-histamine diet, with performing stress management techniques. Also, I changed products such as toothpastes to SLS-free versions as that was a trigger for me. Overhauling my diet helped, but hormones were still a driving force of my symptoms – which is why I introduced more medication to block the MCAS mediators. I now take a wide range of medicines, H1 and H2 blockers along with MCAS stabilisers. My medicines include fexofenadine, sodium cromoglycate, famotidine, Fostair and ketotifen. I have been offered omalizumab via the NHS but have not pursued this option as I want to keep it in reserve; the same goes for montelukast. I would say most of the time medication does manage my symptoms provided I’m keeping a diary of reactions so I can notice any patterns and ensure that I avoid or minimise any of my known triggers.

Unfortunately due to environmental factors along with foods and other triggers, it can be difficult to pinpoint and explain to someone the systemic MCAS reactions you’re experiencing. What I would like medical professionals to know is that these symptoms are very valid and real, they can really impact someone’s life. So access to proper medication if MCAS is suspected is crucial in order to sustain a patient’s overall wellbeing and manage their condition.

For me, my success since being diagnosed with MCAS is all about advocacy and raising money for charities – I have many underpinning health conditions and I’ve raised money for each relevant charity. Another triumph I’d say is being more authentically myself and not shying away from conversations. I’m able to be more open and honest with others, and use my experience to help others if asked to give some generalised knowledge. I feel this will help another person on their own individual journey.

I have succeeded in that I accepted counselling to deal with a lot of my issues which I needed to gain clarity on. I don’t think I would have pursued this if it hadn’t been for the diagnoses, and it’s enabled me to gain a deeper understanding of myself and why I do things the way I do, as well as informing me how to create healthy changes and habits in my life. It also helps me to catch certain repeat behavioural patterns in order to create more peace in my life. It’s enabled me to come to an acceptance of my situation. I can also explore more hobbies and interests which replenish my life, and I now foster positive energies such as creativity.

With regard to alternative remedies, I take supplements such as quercetin and Vitamin C as I’ve been told that these can help, along with diamine oxidase and Toxaprevent. I’ve also had lymphatic drainage massages. I came across these options due to advice from doctors and through support groups.

I choose not to engage with support groups anymore, but initially when I took part regularly it was helpful and very good for me to feel I was understood. After this I wanted to use my own discernment and figure out my own personal needs and body as I felt a lot of the symptoms I was experiencing were different to those of others. I realised this is due to specific health-related factors, meanwhile I’m grateful for the support and care I received while making those connections. I know that I’m always welcome if I have any queries or want to reconnect.

Mast Cell Action has been great for me over the past in answering any questions I’ve had about seeking help, or finding professionals in my area. I can’t thank the charity enough for being so supportive.

Sharing experiences with a support group has helped me to manage my condition a lot