Daisy's Story

I don’t remember a lot from childhood other than when I was two years old I reacted to orange juice which made me very sick. As a teenager I found out that this is not a genuine allergy as previously thought but triggered by an MCAS reaction. As I have got older, I am now unable to be in the same room as someone peeling an orange or eating something containing orange peel because I won’t be able to breathe and will get dizzy and nauseous. I also react to oats and the scent of cinnamon. 

As a child I would also get unexplained rashes and eczema. I would get stomach pain a lot. All my symptoms have worsened now that I am in my twenties. The amount of food I have been able to eat has significantly lessened and I have to avoid scented products. My triggers and intolerances include citrus fruits, red meat, tomato, dairy, pepper, pineapple, eggs, bananas, kiwis, pollen, apricots, hazelnuts, almond milk, melon, salmon, blueberries, raspberries, nickel, titanium, plasters, alcohol, tears (which make my face itchy), water on my skin, ibuprofen, paracetamol, scented candles, cleaning products and chlorine. I have coeliac disease so I also react to gluten, wheat, barley, rye and malt. I can’t get too close to people wearing perfume or those smoking in the street as it causes a reaction. I can’t be in the same room as a family member cooking certain foods that I react to.   

Throughout my time studying undergraduate Law at university, friends often took me to Urgent Care. On one occasion I couldn’t even breathe enough to say my name to the triage nurse after a reaction. I had multiple 111 phone calls and GP phone calls which led to a misdiagnosis of oral allergy syndrome. The amount of foods I could eat began to lessen. I was having more and more reactions to things, and it was becoming more and more random. One day, I could eat something. The next day, I couldn’t eat it. Maybe the following week I would be able to eat it again. However, sometimes I wasn’t able to eat it again. 

I have to think carefully before going to cafes and restaurants given the likelihood of encountering a food I react to through scent.

It took years to get my diagnosis. The doctors suspect I was born with MCAS. My mother had tried various diets and natural remedies when doctors ran out of suggestions when I was a child. In my early teens, I was diagnosed with coeliac disease. We thought this would answer all my symptoms. Although it answered a lot and I was so much better, it didn’t cover a lot of other unexplained symptoms. In my late teens, I was referred to a local allergy specialist. They did allergy testing including a skin prick test and multiple blood tests. Nothing showed on the allergy tests, even things I had severely reacted to. Therefore, I was discharged with no further help. 

Eventually, I heard the term Mast Cell Activation Syndrome from a doctor. I suggested this to the GP as I could tick off almost all the symptoms. Eventually, I mentioned it to one GP who researched it and agreed that I most likely had it. That’s when my pursuit of a formal diagnosis began.  

The GP could not find a specialist, and local allergy and immunology teams rejected my referrals as they had no knowledge of MCAS. I spent hours each day researching for an NHS or private consultant. I sent so many emails requesting appointments or advice, yet anyone who seemed to know about MCAS had retired, was at full capacity with patients or didn’t know enough to diagnose me.  

I did see a private consultant via Skype. Although he gave me advice to cut out dairy, take Vitamin C, prescribed famotidine and increased my loratidine dosage, he couldn’t run diagnostic tests. He left it by saying: ‘I hope you don’t have MCAS because it is really hard to live with, but I also hope you do so that you have answers and a plan.’ Despite his promises to try and help me, he dropped off the face of the earth. 

The GP didn’t have the authority to run tests. This requirement bounced back and forth between the GP and the consultant for a while. Eventually, my GP suggested that I go abroad for a diagnosis as we couldn’t find anyone in England with knowledge of MCAS. I was shocked. I felt at a complete loss. Luckily for me, at the time, my mother was living in Italy. Whilst staying with her, a friend suggested a hospital that specialised in rare and complex conditions. I looked through their consultant list and what they specialised in. One consultant came up with MCAS listed as a speciality. I contacted the hospital straight away asking for help. I was given an appointment a month later. I was nervous that this could be another waste of time, however, the consultant was a fountain of knowledge. She ordered the right tests straight away. I was tested for multiple conditions that could cause similar symptoms and would be treatable; we ruled out many conditions. Then we did a baseline tryptase test and a tryptase test during a reaction. My tryptase level rose during the reaction which demonstrated MCAS. I was finally diagnosed with MCAS, DAO enzyme deficiency (leading to histamine intolerance) and cyclical neutropenia (a rare blood disorder). 

My diagnostic journey was long and expensive. However, I was privileged to be able to go privately and found my consultant in Italy who is passionate about this area of medicine and wanted to help.  

My other illnesses include Ehlers Danlos syndrome, postural orthostatic tachycardia syndrome (POTS), vasovagal syncope, small fibre neuropathy, hypoglycaemia, Raynaud’s syndrome and thoracic artery compression.  

My referrals have been rejected by multiple allergy and immunology teams because they do not understand MCAS. Therefore, I do not have any GPs or specialists in this country to direct questions to. I still talk to my consultant in Italy as there is nobody here. It is sometimes hard to get the NHS to accept a diagnosis from abroad. I find A&E visits scary as I am worried that they will give me something I could react to, since they don’t understand MCAS. (Although when I had to be admitted overnight, they did give me my own room rather than put me on a ward so that I was less likely to react to environmental triggers, and the doctors wore PPE when they came in so that I wouldn’t react to things they had picked up. 

The first GP I mentioned MCAS to looked like a deer in the headlights. They had never heard of it before.

My experience with MCAS seems to go in waves. Some weeks it’s so bad I survive mostly on plain cereal bars and plain cornflakes because my body just won’t tolerate anything else. I have come across others with the condition on social media and that has been so helpful – it's important to find others who understand. and it is always a positive to have such people around me. It’s also nice when we meet up because we don’t have to do something food-related and nobody starts asking: ‘But can’t you just try eating a little bit of this?’.  

Living with MCAS has made me very aware of those with allergies too. Everyone always points out that before we meet up I always ask if there is food I shouldn’t bring so that they don’t react to it. It definitely makes me think more about allergies and any kind of cross-contamination, which I was used to doing for coeliac disease anyway. 

I wish when I went for MRIs and IVs that staff would understand MCAS because if you don’t say it is an ‘allergy’ then they will not understand. Even then, the issue is the range of the types of reactions that are possible from MCAS. If medical professionals understood, we could seek the right care such as medications and dieticians who comprehend. 

MCAS has hugely impacted my ability to eat ‘normally’. I react to so many foods that I basically rotate the same three meals and always have the same breakfasts and lunches. My meals don’t have a lot of flavour: they are very plain and basic. I have to take loratidine before showering sometimes as I can react to water and even plain or hypoallergenic soaps. 

MCAS has impacted my social life because so many social events revolve around food. I am now only able to have bottled water when I go out to restaurants or cafes. This can make family and friends feel awkward because they are all eating when I can’t. I have also been asked to leave cafes and restaurants for not eating their food. MCAS is a big factor because I could react to something completely randomly – and if someone else is making the food then I will have no idea what it might be or how it was processed.  

It impacts going to the hairdresser hugely. My hairdresser is incredibly kind and understanding. She gives me a separate room upstairs away from scents with the windows open so that I am less likely to react. I often bring my own hair products as well. It just has so much thought going into it instead of being the relaxing time everyone else would have.  

Coping with triggers has got a lot easier since having my Medical Alert Assistance dog Jarvis, from Medical Detection Dogs, because he can tell me when I will react so that I can leave the restaurant or cafe or otherwise take precautions. Medical Detection Dogs trained Jarvis to alert to POTS which causes me to faint multiple times a day. Prior to Jarvis, I would get injured from fainting without warning. Jarvis gives me time to lie down safely. Jarvis has taught himself to alert to MCAS and hypoglycaemia. He gives me time to leave a room containing an airborne trigger and take antihistamines before a bad reaction develops. He is so fast with his alerts that he has even reacted when water splashed on my leg: five minutes after the alert, I had hives down my leg. This gave me time to take loratadine to help the hives calm down before severe itching started. Jarvis makes going out with friends and doing things such as going to the hairdressers a lot easier and safer for everyone involved – before him, I hadn’t been to a hairdresser for years and hardly visited cafes and restaurants. I hadn’t been able to leave the house for years due to POTS, but I started feeling safe once Jarvis alerted me to that condition and MCAS as well. 

I have tried to create a positive change by spreading awareness about MCAS. Ultimately, I would really like to help medical professionals understand this condition. I did have to leave my job – and temporarily university – due to POTS, while MCAS certainly doesn’t help things. I now work from home due to my chronic illnesses, which does mean I have to factor in less about MCAS. I wish medical professionals knew about MCAS full stop. I wish they understood that we can react to literally anything and it is just as serious as having an allergy. They need to consider it with every type of medication. They need to consider it with patients on wards and what they may or may not encounter and react to. They also need to recognise symptoms that can be attributed to MCAS and what might be something else. 

Most medical professionals have just never heard of MCAS and that is an issue because they can’t look at the full picture, only the one symptom they are trained to deal with.