My Story

Why British Food Allergy Awareness?

An enemy within my food.

I found myself in resus with anaphylactic symptoms, I was bright red, swollen in the face and all over, itching all over, throat was sore, swallowing was difficult, my chest was tight, my breathing was difficult, and I was scared.  I was treated and could go home when I started to get better, I had to be good hour clear of symptoms. I was handed a prescription and told come back tomorrow to hospital dispensary as it was closed at the time of me being there. I came back the next day to pick up an adrenaline pen, given no instructions and left to go home.

Now at home not feeling 100%, not knowing how to use the adrenaline auto-injector, not knowing what caused my reaction, and very bewildered. I carried on as normal, but the anaphylactic symptoms kept coming back in varying degrees but had no idea what was causing them, and this continued for 10 weeks.

During these 10 weeks I visited the doctors regularly, but they had no idea what was going on, at one point I had 2 doctors with me after the surgery closed to see if the medication, I had taken was going to relieve the symptoms or was they going to have to call 999.

I was waiting for an emergency consultant appointment but during this time I started to keep a complete detailed diary of foods, even cutting out labels to see the connection, there was an enemy within my food, and I did not know what it was. I was becoming very depressed everything I was eating, and drinking was causing me symptoms that could be life threatening, I was crying with frustration, crying because I felt so ill and at that point everything seemed like a massive mountain to climb.

I can never explain the pain of anaphylaxis where everything on the outside and inside of the body is swelling. I was suffering:

  • lesions on the mouth and tongue
  • Tingling lips, swollen tongue
  • Swollen throat, swelling of throat outside
  • Swelling of the face
  • Difficulties in swallowing
  • Swelling of the ear canals inside
  • Pain in the ears
  • Going bright red, giving off heat
  • Hives
  • Pounding headache
  • Hear my own heart pounding, heart racing
  • Feeling faint
  • Burning in my lungs
  • Breathing difficulties
  • Vomiting
  • Feeling dizzy
  • Feeling weak
  • Acid diarrhoea to the extent that it hurt so much that I am crying on the toilet as my stomach is purging the allergen from my body.
  • Pain in places I cannot explain

You could understand why I did not want to eat or drink, but it is not like just giving up sweets.

I finally found out what I was allergic to, milk, at this point I should have been ecstatic, but this brought a second round of depression. I had not seen the consultant yet, and when looking at labels milk was everywhere. I soon found out quickly that I was even allergic to the smallest amount of milk. After 40 odd years of eating what you like to have to change your diet completely overnight became a nightmare. I find myself looking at labels several times because I had even made mistakes, also you must even check the food label of food you have had before because food companies change ingredients.

I was still getting ill and did not know why, the reason for this turned out to be cross contamination from things we did not think of. Our home had to change:

  • Separate utensils
  • New saucepans
  • Different cooking processes
  • Separate cupboards
  • Different sections of the fridge
  • Changing wooden spoons as the wood absorbs so there would be contaminates from the past, there was so many.
  • Tin foil became my best friend to place on baking sheets to make sure that there is no cross contamination.
  • Washing hands after handling items that may have milk in, so I do not transfer the contaminate to my mouth by mistake.
  • Then there were items you might not even think of like Recaldent in toothpaste, which is milk, shower gels, hand soaps, hair dyes, make-up, shampoo, condoms have milk in, and even a glass of wine for an evening treat became a minefield, as some wines are filtered through milk.

I finally saw the consultant and I was diagnosed with a milk allergy and not to have any milk of any type, even though my blood tests came back negative. The consultant prescribed medication, this medication I must always keep with me. I was not told that the adrenaline auto-injectors had to be carried in a special pouch to keep the temperature down during the summer, and to keep away from direct sunlight.

I take:

  • 10 mg of Loratadine a day
  • 4mg chlorphenamine if I am eating something that I am not sure has traces of the allergen in
  • When anaphylactic symptoms start, 8 x 5mg prednisolone
  • Ventolin inhaler to help with breathing difficulties
  • I must judge from there when to take my adrenaline auto-injector pen and seek urgent medical attention.

Since the beginning of this, now I have become allergic peanut, nuts, and sulphites. I was lucky it did not all come at once because I had the experience and confidence by this time to handle it.

It took me a long time to even a chance a coffee out, I had to trust my judgement before doing this. Eventually I found the confidence to go and a meal out, this is stressful. I find myself asking more than once about the food this is not because I do not trust the abilities of the staff or chefs that is not the issue, I just need the staff to convey confidence in their abilities to me, it is about me feeling safe and feeling confident that I am safe. It takes a lot of trust, I make mistakes and I am responsible for my own health, I have to trust the people around me that I know with my health and going out for a meal I am putting trust into people I have never met. I do not want to be treated special, in fact I want a normal life, all I want is to feel safe.

While this rollercoaster was going on, I felt I could not be the only one who was left with no support with information or emotionally, that people around you do not realise how much your life has changed, and how much you have changed because of your food allergy. I started on Facebook a page called Allergies Matter, I felt that I wanted to do something with this health condition of mine, over time the idea evolved.

There are some fantastic charities, and organisations established, and I do not want to take away from them, I would like to work alongside of them. BFAA is about:

  • Giving information out in bitesize chunks
  • Giving information about people’s rights in bitesize chunks.
  • Lobbying and campaigning
  • Food recalls information
  • Encourage people to give feedback whether good or bad, it makes a difference and helps with training, and the good feedback is nice for companies and staff to feel valued for their commitment for keeping us safe.
  • Guides to help people through their journey with food allergies

Even now I am more experienced with my allergies I still get down now and then; I walk into a supermarket I want a bag of crisp but want something different than the ones I normally have. I look at the labels and after picking up 20 bags of crisps and still cannot find a bag that says no milk or says ‘may contain’ or ‘traces of’ on them, I just feel like walking out in frustration. Food companies are now producing more allergen free foods, but the industry has a long way to go to cater for the rising increase of people with allergies.

Everybody is different, everyone handles situations differently I can understand to a certain extent, because I have been through the journey too, and my journey will continue everyday while I am keeping myself safe. It has been a steep learning curve, I found that there was little information at times and no real support from medical sources for depression unless you wanted to go on antidepressants.

British Food Allergy Awareness wants to bring people together and serve one common goal to help to keep us all safe, while supporting each other through their journey of living with food allergies.

Thank you for reading.

Medication I must always have with me.

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