I have had a big day. BIG. Huge. If you’ve never seen the film ‘Pretty Woman’ you won’t get the reference, but trust me when I say today may have been a game changer.
The Holy Grail for anyone suffering from Histamine intolerance (HIT), and people with Mast Cell Disease who find it necessary to follow a low histamine diet, is the ability to test the food we eat for histamine. The reason it’s so vital is that many factors affect histamine formation, the main ones being how old a food is and how it’s been stored. A lab testing the histamine content of imported strawberries that have spent weeks travelling from Israel, for example, may come up with a very different result than if they’d tested strawberries taken straight off a bush in their garden. And how do we know if a specific strain of British strawberries have the same histamine content as a specific strain of Spanish strawberries? The answer is, we don’t. Realistically the only way to test the amount of histamine in the food we eat is to actually test the food we eat, and my food here in the UK will be different to the food you might be eating in the States, Europe, Australia, Asia or anywhere else on the planet.
In October 2018 I wrote this post about researchers at City University of Hong Kong who were developing a way of testing for histamine using your mobile phone and a sensor. Well, today I had the joy and privilege of meeting one of the researchers, Victor Lau, while he was on a short trip to the UK. I have been excited all week waiting to meet Victor and was not disappointed. He was absolutely lovely and has given me permission to talk about our meeting and the home histamine testing device.
Hong Kong practically lives on fish and seafood but food standards aren’t as good as they might be, so since 2016 the researchers have been working on a way to test for histamine in seafood for use in the commercial food industry. The research is Government funded so not driven by profit. Until I emailed them back in October they had never heard of Histamine Intolerance or Mast Cell Diseases and are now hugely interested in our plight. Victor made a point of telling me that it’s not through any desire to make money out of us – they genuinely love the idea of helping patients and when the device becomes available to buy they will keep the cost as low as they possibly can.
I have to stress that the current device is a prototype and still being refined. There’s a long way to go to reach a saleable product, not least because the results have to be rigorously accurate if you’re dealing with sick people and allergic reactions and then the device would need the relevant Governmental approval, however I’m assured that we’re only talking 3-4 months before a working prototype would be available for me to test 😮
The equipment needed for the current testing system is as follows:
- An app for your phone. They gave me the app and it was a doddle to install on my Android phone.
- The testing device, which is about half the size of a mobile phone.
- Some testing strips – these slot into the side of the testing device and you place your food sample on the strip.
- Some food to test, preferably something which can be formed into a liquid when mixed with water.
- Some distilled water.
- Some weighing scales able to measure in individual grams.
- A dropper.
Here’s a picture of today’s set-up:
This is how the testing currently works:
- Place a sterile pot on the weighing scales.
- Measure out 1gram of food into the pot.
- Add the same amount of distilled water.
- Mix together until you have a liquid thin enough to pass through a dropper.
- Open the app on your phone – it gives you guided instructions as to how to conduct the test.
- Using a dropper, place 2 drops of the food mixture onto the end of the testing strip (that’s the small orange-coloured strip sticking out of the right side of the device in the middle left of the picture). Wait 2 minutes for this to be measured and registered. Wipe off.
- Add 2 drops of distilled water onto the testing strip to re-calibrate.
- Repeat another 4 times, alternating food and water.
- An average histamine content will be calculated from these 5 samples.
- At least, I’m hoping I’ve got the technique correct – I’m no scientist and it was all new to me! I’ll show the guys this post and they can correct me if I’ve got something wrong.
Victor about to weigh tea!
The process is a little time consuming, taking about 10 minutes per food item, but it’s really easy to do. Currently it’s not something you’d be able to do in a restaurant, but I don’t care so long as I can test the food I eat at home! Speaking of which, Victor asked me to take some food samples along to be tested. They’d never tried the device on anything other than seafood, so were as excited to see the results as I was! However, the device is currently only calibrated to test for histamine above 100ppm (parts per million), which is a safe level for healthy people but of course not for those of us who have to follow a low histamine diet – we need to be able to test for 20ppm at the very least and Roy Vellaisamy, Victor’s colleague in Hong Kong who I spoke to today on the phone, assures me this should be possible. So bear in mind today we could only say if a food was below 100ppm or above 100ppm but not give a precise figure.
I miss tomatoes sooooooo much, so the first food tested was tinned, chopped tomatoes from Tesco. They tested above 100ppm so there’s no way you could include them in a low histamine diet 😦 However, I’d also taken with me a fresh tomato and this tested below 100ppm! We’ve no idea, though, how much below – it could be 10ppm or 99ppm so tomatoes are still not a food I’ll be eating until I know for sure how much histamine they contain. Interestingly, Victor re-tested the fresh tomato a couple of hours after I left, which by this time had been out of the fridge and in a warm environment for several hours. It now tested above 100ppm, which on the surface looks as if histamine had formed rapidly in the warm environment in which Victor was testing. However, it may not be quite that cut and dried. We only know it initially tested below 100ppm, but we don’t know by how much – it could actually have been 99ppm. And in the second test, we only know it tested above 100ppm, but again we don’t know by how much – it could just be 101ppm. Of course, on the other hand it could be that it tested as low as 30ppm on the initial test, but after being kept at room temperature for several hours it had reached histamine levels of 190ppm! The ability to test precise levels of histamine in a food sample is something which would be vital to us if the device were to be useful to us as a patient population.
The next food I wanted to test was a good old British brew (well, actually, my tea was organic black Clipper tea from some far off land 😉 ). I was gutted when this tested above 100ppm (and that’s without adding milk) but I have to be honest and say I still don’t think I can give my daily cuppa up. Histamine is a bucket effect, and as long as my bucket is low from eating foods low in histamine the odd cup of tea shouldn’t fill the bucket too much and tip me over the edge and into a reaction. That’s my excuse anyhow and I’m sticking to it 😉
By this time my train home was almost due, so I had to leave my other samples with Victor to test in my absence. I’d taken some Quorn mince and some cocoa powder, so I’ll let you know the results when I have them.
Today has felt like a watershed day for those of us with HIT and/or MCAD. I can’t stress enough how interested both Roy and Victor are in our situation, how generous and lovely they are being with me and how much they genuinely want to help. It certainly makes a change from the usual way we rare disease patients are treated. I told Victor that HIT seems to be much more recognized in Germany than here in the UK, and he luckily has a close colleague who lives in Germany whom he can find out more from. For my part, I gave him Dr Seneviratne’s details being as though he’s the leading HIT & MCAD doctor in the UK and is so knowledgeable on all things histamine.
Victor stressed that they want to make a device which is useful to us, so if any of you have any questions please do comment below this post and I’ll forward them all. I have every faith that, with a bit of tweaking, the device could be brilliant for us – the ability for you to be able to test the food you eat, and for me to be able to test the food I eat, would be awesome and something I didn’t even dream would be possible. Not only that, but Victor thought it wouldn’t be too difficult to develop the device to test for things other than histamine – nuts, for example, or gluten! All that would be needed is a separate testing strip whose receptors bind to gluten instead of histamine – the rest of the testing kit, ie the app and device, would remain the same. Imagine the possibilities in our modern world where food allergies are rampant!
Watch this very exciting space 🙂