Some say that coffee and MCAS can't go hand-in-hand. That you will get a flare of symptoms due to the histamine content of coffee. Others say that it is an individual thing - some people with MCAS can drink coffee, others cannot. This is my experience.
The Coffee Routine
For years coffee was a central part of my daily routine. There wasn’t ever a day that I didn’t have a coffee, either when I got to university or work, or when I was out in the evenings or on the weekend. It was a ritual to grab a coffee on my way to my office or the library. I loved every bit of it. The smell, the taste, the routine of it. It was a comforting warm drink in the winter, and in the summer an iced latte brought a refreshingly cold break in the day.
Then I started having headaches and migraine attacks and was advised to switch to decaf coffee, which I did without too much difficulty. Although I will admit that not having that ‘hit’ of energy first thing in the morning at my desk was something I missed! Everything changed a few years ago when I was diagnosed with mast cell activation syndrome. After being given some questionable advice from one doctor (that I no longer see) I gave up coffee altogether. I also had to give up tea and so my mornings changed a lot. Herbal tea is great, but it doesn’t have the same smooth taste that a tea or coffee brings.
But lately I have got back on the coffee grind. I saw a dietitian who specialises in histamine issues and she noted that coffee scores a '1' on the Swiss Interest Group food compatibility list, histamine intolerance. This scale rates foods between '0' and '3', with '3' being the highest histamine. As coffee scores a '1' it does have a degree of histamine, but isn't as problematic as foods such as vinegar or chilli pepper which are a 2 and 3. In her opinion, the tolerance of coffee if you have MCAS is often an individual experience. Some people can tolerate it, others cannot. It is literally trial and error as to whether you can tolerate it or not. There's nothing that you can do other than try it out . . .
- Always follow the advice of your doctor or dietician in relation to coffee and MCAS. This post is my story and for informational purposes only. It does not constitute medical advice, or suggest that any person consume any particular product.
My coffee and MCAS experiment
After months of contemplating it, I had a cup of decaf coffee at Starbucks (where else!) while out doing some shopping. I don't know exactly which coffee it was, but I'm guessing something like the Starbucks Decaf Espresso Roast. This was quite a big deal for me, which may sound silly. But when you know that food can cause you considerable pain then you become scared of anything new or different. Food stops being a source of pleasure and instead becomes something to be wary of – is it going to cause symptoms? Am I going to regret it? Should I play it safe and stick to something that I know doesn’t cause problems?
The coffee was everything I remembered coffee to be for me. Warm, full-bodied and slightly sweet without being sickly. It had that autumn-season smell and indulgent taste. It is a taste that I love, but had slightly forgotten. But I can tell you I remembered it instantly with the first sip. Wow, that was flowery language! You might notice that I love coffee.
Most of the time I do not get an increase in symptoms. I always stick to decaf coffee, usually a cappuccino with no chocolate or a latte, and have either oat milk or almond milk (which I am able to tolerate). I have noticed a slight increase in skin pain and flushing afterwards at times, but that is a very common symptom for me after any food or drink, no matter how 'safe' it is. Other times there is no reaction at all. I am mindful that I may have indulged in some cake or cookies that are probably not the best option histamine-wise as someone with MCAS(!) I do also wonder on the occasions when I do feel some flushing whether it is also due to the environment, as coffee shops are often too warm for me, or other factors such as stress, food triggers etc.
For the time being I am happy to continue drinking coffee a few days a week, sticking only to one cup a day, as I do not feel that I experience a significant adverse effect. It is no longer the case that I fear coffee, in fact it has become part of routine - not daily but when I am in need of a bit of a treat or with friends or family. Please be aware that this is just my experience, and your experience may differ from mine.
*non-dairy milk has variable scores on the SIGHI list. Please use that which is suitable for you. Rice and oat milk score I on the SIGHI list, and almonds (for almond milk) also score 1. Coconut milk scores 0.
Types of coffee
One important element of my consumption of coffee has been the type of decaf coffee that I drink. Although it isn't always possible to know the processing of the coffee when in a coffee shop or restaurant, I do pick the decaf coffee that I drink at home quite carefully. Personally, I feel that it is a good idea to drink coffee that is as 'clean' as possible and organic, and has the least problematic method of decaffeination to try and avoid any substances that may cause my MCAS to flare up.
My go-to brand is Taylors of Harrogate Decaf Coffee as is always good quality and is decaffeinated using natural water. Also on my shopping list is the Clipper Decaf Roast and Ground Coffee. Love Clipper as a brand! It has won a lot of awards, and is, as the name suggests, fairtrade and organic.
So for the time being coffee and MCAS are co-existing relatively well in my world! I feel happy drinking coffee now and again as long as it is decaf, and don't have any plans to give it up in the foreseeable future unless my symptoms become more problematic.
Let me know your experience of coffee and MCAS! Can you tolerate coffee? Or have you had to give it up due to your medical conditions?
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Links in text are US links, for my UK readers these are UK links:
Raw Bean Decaf Filter Coffee (not available in the US)
Please follow the advice of your doctor as to all medical treatments, supplements, and dietary choices, as set out in my disclaimer. I am not a medical professional, and this is simply my story and the resources that are helpful to me.