We’ve written in the past about starting a low histamine diet due to our Mast Cell Activation Disorder MCAD (also referred to as Mast Cell Activation Syndrome MCAS), but what does that really look like for our day-to-day lives?
Well, the thing about being low histamine is that is looks different from person to person (even as sisters). One of us might be fine with a certain food, while the other reacts poorly to it. It’s very individualized and that’s still a hard thing for us to navigate.`
We’ve tried many different types of diets to help with our health throughout the last 10+ years. Gluten-free, dairy-free, soy-free, and of course low histamine (which has been by far the most effective). While we’re not currently on all of these diets, being low histamine has been, and still is, the most difficult one for us to follow, not just because it’s restricting at times, but it’s difficult because there’s no clear and cut guide to follow per person.
Histamine and Mast Cell Activation Disorder
Let’s start with the most important info: histamine is necessary for us to function and most foods either contain histamine or make the histamine in our bodies increase. All of us are fine with this up to a certain point and then most people can break down any extra. We, with MCAD do not do the breakdown very efficiently and there lies the problem – our bodies have to deal with the overflow. So… our goal is to eat foods low in histamine and then, if we have something containing more (by choice or by mistake), the extra doesn’t give our bodies too much of a problem.
The thing is that it’s not just histamine that has a bad effect but also foods that make your body react like they have been over exposed to histamine. It’s complicated. There are guidelines and lists to follow but we have found that some foods on the lists are ok for one of us but not ok for the other so there may be slight differences in the diet. However… the basics must be followed. Just remember that foods that have been sitting out for a while or even refrigerated leftovers, are a no-go. Fish, if super fresh, is good but histamine grows on fish very quickly so it is risky. Histamine does not cook out of foods – fresh everything is what you want.
Kate: I am vegetarian and Em is not so Em must make sure that all forms of animal protein she eats are recently killed or frozen shortly after. For both of us aged cheese is not good, neither are some yogurts (which were discovered by trial and error).
Low Histamine Diet
The easiest way to stay low histamine is to only consider the food you can eat and not waste time pinning for the forbidden. Be in control of what groceries are being bought and brought into your house. We don’t mean you have to become a full-on control freak but if you’re not the one shopping yourself, send a list of what you can have. Eating at home makes staying on a low histamine diet much more manageable but after the first few weeks on your new diet (when you have figured out your options) eating out is also do-able. Try to choose a restaurant that offers fresh foods and order similar items to those you would be eating at home. Fresh is best.
We each have a few go-to options for every meal (breakfast, lunch, dinner) that we like to rotate between and can add little variants to when we want to change things up. Having a menu of sorts helps in knowing what foods/combination of foods work for us.
Kate: For instance, as I said, I’m okay with certain types of yogurts. This is one of my favorite breakfasts and I like to change up the toppings I pair it with every morning. Sometimes I’ll use granola and a fruit or berry I know I’m okay with, sometimes just flaxseed powder.
We try not to feel deprived at all and make really delicious foods for ourselves – it is easy to scramble a couple of eggs with some fresh basil and a little fresh cheese or to bake some apples with maple syrup and flaked almonds, or roast a tray of veggies with olive oil and salt. However… the first couple of weeks were hard as we stayed super strict and then we slowly added one “possible food” at a time to see how we reacted. This was worth all of the time and effort as we can now know when we are going close to the edge without our histamine necessarily “spilling over”.
What we struggle with is real life interrupting our home life balance – bringing in takeout, going out to dinner, going on vacations or out of town. We’re very sensitive so when our routines get jostled we notice it big time! Eating out is usually a social event. We don’t want to over isolate ourselves or make everyone eat something specific just because we have to.
This is when things get a little tricky for us and we enter a gray zone. We don’t look at this diet as black and white. There’re a few food items that we will not eat under any circumstances (because we have bad reactions quickly) but normally nothing horrible will happen if we eat just a little of any food out there – it is more a matter of not having a histamine build up. If we know we are going to be eating out, we try to be super low histamine before and afterwards. This makes a huge difference. It’s the accumulation of histamine that is the biggest problem. Balance is the key – don’t tip the scales.
While on this MCAD journey for the last few years and fine tuning a diet that works for us, we’ve become much more aware of when we’re having a Mast Cell reaction and what those symptoms look like for each of us. We can feel it. This makes a big difference in recognizing when we’re being triggered by certain foods and understanding what we can tolerate.
Kate: For me, I get a very strong jumping out of my skin feeling (if that makes sense?), itchy/tingly feeling all over, itchy throat & burning cheeks/face.
We all have our specific triggers and fortunately leaning what those are is just through trial and error. If we feel histamine-y (as we often refer to it as) we try to stricter with our intake & flush out with water. We’ve mentioned h1 and h2 blockers in previous posts (meds to help reduce histamine reactions in the body), while we always take them as a precautionary approach – we might up one if we are having a bad episode. Also some people have super results with DOA (Diamine Oxidase) Which helps to digest histamine.
This all sounds like a bit of a hassle but this diet has worked wonders for us and is definitely worth a try if you think you think you might have Mast Cell Activation Disorder!
Love this so much ! I have Lyme disease and have got to a point with treatment that I can’t seem to get better – I made the mistake of drinking wine after a long period of not drinking at all – I have had a terrible reaction to histamine and can’t tolerate any foods at the moment bar rice and apples – no skin ! Your you tube and blog has calmed me so much I will attempt a few more foods from the list ! Your both gorgeous thank you xx
Absolutely! It was fortunate to have found out about low histamine diet within two months of getting extreme symptoms of rashes and swelling. It is still hard to figure out the diet in the beginning but I got the knack of it in time. When I look back at my acne and red flushing (that got worse in my mid-20s) in face and chest throughout my life, I could see that I had food sensitivities which did get better after eliminating gluten from my diet but I still had IBS symptoms. I completely identify with the closing up throat feeling or for me I have to say it feels like my throat is getting tighter but in the ER the doctors don’t see that it is swelling or closing only that my gag reflex is very sensitive during this time and my tongue does look swollen to me but others can’t fully see what I’m experiencing. It became more obvious when I ended up with angioedema which there was no doubt was really happening and all the medical staff can see it. I think even though the signs weren’t obvious for many many (30+) years, I had some form of histamine intolerance for about as long as I had IBS basically. Yes, I was eating "healthy" with fermented foods like sauerkraut and kimchi and taking probiotics. At the age of 45 there was something that had to be done before it killed me. A gastroenterologist didn’t know about histamine intolerance and told me that histamine and allergies are one and the same thing. I’ve since learned that isn’t true. When I was trying to figure out what was wrong I felt like I was going crazy. I wish more doctors knew about histamine intolerance and not act like I didn’t know what I was talking about. Now, there is too much research to prove it exists… but still doctors (especially in the USA) don’t recognize it.
So glad you are bringing more awareness about MCAS and Histamine Intolerance and the benefits of low histamine diet. Splendidly done!
You two are a lot of help in explaining your experience and it helped me tie a lot of what I was going through into something that makes sense. Thank you thank you! I have found on Youtube about what foods are higher in biogenic amines among other things, and it talked about how dark chocolate is lower in amines (histadine) by the way it is processed surprisingly. I don’t know if I can share the link here, but I’ll try…
https://www.youtube.com/watch?v=i9DA2swl0Ew
It might be rather dry to listen to a lecture like this, but it was very eye opening to me.