We seem to live in a world where 'healthy' advice is given at every turn. People sipping a matcha latte, popping all the supplements they can fit in their bag and then going for a HIIT workout (with smoothie afterwards of course) and then suggesting you do the same . . . Yet some seemingly 'healthy' pursuits can be just the opposite if you are living with MCAS (mast cell activation syndrome) as I am. It can get a little frustrating to be almost frowned upon by not going with the crowd and for explaining why you are eating fries not salad (more on that below!).
One of the most frustrating aspects of this condition is people arguing that the MCAS isn't real. Well I know many of us know first-hand that it very much is, and we live with symptoms every day and so seek to avoid triggers.
Now the thing with MCAS is also that triggers can be very individual. So if these things work for you then that's great, but for many people they can actually be harmful. The moral of the story? Always check things with your doctor!
This post is for informational purposes only, and does not constitute medical advice in any way. Always consult a doctor about your symptoms and medical care.
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1. Food and drink
Many people living with MCAS are advised to follow a low histamine diet, and to avoid certain foods. When I walked out of my medical diagnosis appointment with my list of 'allowed' and restricted foods I was lost. As well as having lots of foods I loved on it, it also had many that I thought were really good for me such as green tea, tomatoes, spinach and avocado. How was I going to make salad without those?!
So, sometimes I will end up eating fries rather than a salad when I'm eating out for lunch. Am I being unhealthy? Well yes and no. Yes, because let's face it, fries aren't the healthiest. But no, because the alternatives on a cafe menu aren't healthy for me as a person with MCAS. And the looks you get from others about ordering fries? Honestly, I have learnt to ignore them . . .
If you have been advised to follow a low histamine diet then perhaps you may like to check out my low histamine recipes.
2. Intense exercise
That HIIT workout, spinning class or half marathon your friends may knock out on the weekend? Well, healthy for them perhaps, but unlikely for those with MCAS. Exercise can be a trigger for mast cell activation and so result in symptoms.
Perhaps exercise isn't possible for you, or perhaps it needs to be of a lower intensity and activities such as yoga, pilates or a gentle walk. Consulting with a qualified physiotherapist may be really helpful to organise a programme suitable for you.
3. Sauna or steam rooms
There's a lot of (controversial) talk of sweating out toxins these days by using a sauna or steam room. If I did that I would be so unwell (and yes, I've tried, years ago). I went faint feeling, and had painful pink burning cheeks within minutes. I felt awful. Heat can be a trigger for mast cell activation, so I would suggest caution over this supposedly healthy past-time and, again, check with a doctor before trying it out.
4. Supplements
Some supplements can be beneficial for some of us with MCAS. I take quercetin everyday as it is a reputed mast cell stabiliser, as well as vitamin C. This was started under the guidance of my doctor, and works for me. Of course, always follow the advice of your doctor as we are all different in the things we should take.
Other supplements may be more harmful though. I'm not going to give details here as I'm not a qualified doctor or dietician. Just to suggest that you seek medical advice from a qualified professional before raiding the health food store (or Amazon!) before trying anything just because others without MCAS find it helpful.
5. Essential oils
Fragrance seems to be EVERYWHERE at the moment. Every shop seems to have candles burning, and diffusors pumping out strong smelling scents. Gifts for birthdays and the holidays often involve perfume or scented personal care items. I have to give them all away to friends or family.
With essential oils though, they have that 'healthy' status don't they. Many people find them helpful when they feel unwell, using peppermint for migraine or lavender to help with sleep. If this works for you then that's really good.
However, with MCAS this may not be possible and it could trigger an attack. After all, many people with MCAS have to wear an N95 mask (and this is pre-pandemic, not because of it) such as those by Cambridge Masks or Airnum, when going to public areas due to scent.
Have a read of Sheryl's post on gifts not to give someone with chronic illness for why hand creams, skincare and other items aren't the best idea for birthdays and holidays.
Some helpful books
If you are new to a diagnosis of MCAS, then it may help to do some reading around the condition. I find it gives me lots of information and is also beneficial for discussions with my doctor. The two best books I have come across:
Lawrence Afrin, Never bet against occam: mast cell activation disease and the modern epidemics of chronic illness and medical complexity
Amber Walker, Mast cells united: a holistic approach to mast cell activation syndrome
Related posts
Trying to calm down a MCAS flare-up
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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 post, as well as all other posts on this blog, are for informational purposes only.
Sheryl Chan says
Thank you for writing this post. I think I (and many others with chronic illness) have been doused with every single one of these nonsensical advice. Some have been so insistent and pushy I've had to cut them off.
throughthefibrofog says
I've had the same, often from friends who have no idea what my conditions are but yet seem to think they can treat them for me. So bizarre they do it.
Chronic Mom says
I didn't realize essential oils were a problem for people with MCAS. Of course, it makes sense now that I think about it, since they are a scent.
throughthefibrofog says
It can be for many of us, anything fragranced really. I have to hold my breath when I was in shops because of all the perfumes etc.