I look forward to my trips to the allergy clinic because I learn stuff every time, mainly about my skin and eczema because the specialist I see is a Dermatologist at Oxford Churchill Hospital.
I am reminded I am not a hyperchondriac and that my allergies are real and my eczema is not that great. I need to learn to manage it better, to find a way to moisturise my skin, which seems to remain dry no matter how much oil and emollients I rub in, which is a lot, twice a day. I feel slippery as an eel but it never seems to improve my skin.
So, first things first, due to the long waiting lists and shortage of specialists the waiting room is likely to be quite busy. Make sure you’re early so you don’t miss your slot but we warned, things don’t always go as planned…
Delays mean we all chat to each other
Usually when I sit in the waiting room I’m like a true English woman, I read a book, play with my phone but rarely speak to any of the other patients beyond the pleasantries, a smile and a nod. Well you don’t want to be too nosy or come across like a crazy allergy stalker.
This time there were delays. Mammoth delays. You might think this would be a bad thing and it wasn’t great for the car park fees. I know I was annoyed at having to wait 1.5 hours longer than I was expecting to, but it meant that we all got chatting.
As the poor nurse worked her way around ascertaining who was the 10 o’clock and who the 10.15 and working out when they might be seen, I and the other 11am and 11.30′s were beginning to see we were way down the list already.
We ended up exchanging allergies, comparingsymptoms from allergy, asthma, eczema to food intolerances and how we coped. Many of us had asthma. Most of us had eczema too. But all of us had allergies. One lady was having an anaphylactic reaction every week which terrified me to the core. I am lucky that I manage to go for almost a year between anaphylactic reactions and I’m now at 1.5 years since my last one and hoping I never have another. It was actually really nice to sit and chat to each other about what our allergies were, how we coped, when we were diagnosed etc.
Once you get a referral, this is what you should expect:
The third degree
You will get asked a lot of questions about your history. What symptoms to get, when did your allergies begin, How often do you have reactions, what kind of reactions do you get? etc. etc. Your allergy history is documented and used to refer to at every appointment.
This is where keeping a detaild food and mood diary can really help, especially if your reactions are confusing and you’re not sure. Test can help to pinpoint allergens but you should also ask for a referral to a nutritinist of dietician if you are at all worried about what foods you should be substituting.
Skin prick tests
These are the first line of testing and they are nothing to frightened of. Depending on how many allergies need testing you will visit a nurse who will write with an endelible marker pen (be warned the ink will be on your skin for days… and take much scrubbing to remove) letters to denote each allergen to be tested.
First is the positive histamine test, this one should always react.
Next is the negative test which should not react.
Then the various allergens you’re being test for are lined up in little bottles, or if you have a sample of a food with you that can be tested too.
A blob of clear liquid is put on the skin, then a tiny little disposable needle is dipped into the allergen and then pricked very quickly into the blog of liquid next to the letter it refers to.
This time I was tested for Lupin, Kidney Beans, Tomato and Celery.
It’s worth remembering that this is not a competition. It’s not about the size or redness of the reaction at all. If you get anything that is showing significantly more than the negative comparison it will be measured and noted as an allergy.
I had a reaction to celery.
Slightly less to tomato but still markedly more raised and red than the negative test.
It itched like crazy and you have to try very hard not to scratch it but to leave it to react for about 10-15 minutes.
It was deemed no reaction for lupin but looking at this photo it does look slightly raised.
Nothing for kidney beans either but it was pointed out that we tested raw beans whereas my reaction had been to cooked beans so it may not be conclusive. I’m avoiding them anyway.
This probably follows how my allergies are; of the four the celery allergy is the worst, the tomato allergy just turns me into a raging eczema-ey red tomato faced madwoman. I didn’t know if would react to lupin as I’ve never ever eaten it and kidney beans cause a hayfever type reaction.
RAST blood test
To further confirm any allergies you might have a blood sample taken so it can sent away for testing for your particular allergen. You will usually then get a letter in the post with the results and your next appointment.
Prepare for your visit
If you are expecting to have tests done, don’t take any anti-histamines for a week.
Bring samples of any foods you want testing in case they don’t have in their stocks.
If you have questions, write them down and make sure you don’t forget to ask them and don’t be fobbed off.
I usually have difficult questions my poor allergy doctor and this time I didn’t always get the answer I was after.
Me: I’m interested immunotherapy for dust allergy as this one causes me the most hassle.
Dr: Because or your asthma you are not eligible for immunotherapy.
But hang on a minute? My dust allergy causes such crippling asthma when I go out, that’s why I need it… why can’t I have it? This answer did not impress me. Is that right? Really? Because you have a dust allergy you don’t qualify for dust allergy immunotherapy? Who does qualify then? People who aren’t really allergic?
The chances of me getting any kind of desensitation to the myriad food allergies I also have are pretty non existent.
I asked about needle length of adrenalin auto-injectors which has been bothering me for some time. Not a problem according to my Oxford specialist, though I left him some reading matter of recent studies suggesting this might always be the case.
I also asked about helminth therapy which was most definitely not recommended by my GP or my Oxford doctor. I get that they can’t support all these wacky treatments but it’s no wonder people go off on their own and try to fix themselves because the answer otherwise is pretty much – go and get on with life not travelling abroad, rarely eating out, only eating food you prepare yourself. Just put up with it.
Generally I’m very happy with my life. I’m a happy person but it makes me cross that my quality of life is not valued much at all. Anyone with anaphylaxis is just expected to cope with it, to live with the day-to-day worry of a serious reaction and to cope with all the less serious reactions to tiny traces that happen when let our guards down.
On the plus side, I have been prescribed Protopic, the magic bullet eczema wonder cream which I’ve heard so much about but never been able to get my hands on. Hopefully this might help me shift my nodular prurigo which is unsightly and painful.
So what’s your experience at the allergy clinic? Good, Bad? Indifferent?