LindsayAs usual, I am behind on my posts. We just moved into a new house, but more on that later.
Although my tests for mast cell activation disorder (MCAD) came back normal, my POTS doctor still thinks I might have MCAD because (1) I do exhibit typical histamine responses which (2) respond well to the cromolyn, H1 & H2 blocker treatment. If it wasn’t for cromolyn, I would never eat.
Despite responding well to MCAD treatment, my blood pressure has been high recently. My doctor suggested that I might also benefit from a low-histamine diet. I have been blessed with good genes and have never really had to go on a diet. I lost a lot of weight about 10 years ago just before I was diagnosed with a mild case of gastroparesis. To gain back some weight, I went on the “ice cream diet”, but I’m pretty sure that’s not an actual thing.
I’ve watched as others subscribed to fad diets, downed mass quantities of cabbage soup or urinated on strips to check their ketones. Certainly I have never wished to have a few extra pounds that would necessitate such behaviour, but I have always been slightly envious of the camaraderie some women develop when discussing counting points, or losing those last few pounds. Dieting sucks, no doubt, but the subculture of dieters has always seemed very welcoming, and I admit to occasionally wishing I held membership in such a club. Trying the low-histamine diet recommended by my doctor didn’t sound too bad.
In people with mast cell disorders, certain triggers can cause mast cells to become overactive and dump high quantities of histamine, prostaglandins, and leukotriene. Triggers include:
- hot/cold temperature changes
- exercise
- perfumes or other strong fragrances
- chemicals or additives (including household chemicals and food additives such as MSG and aspartame)
- stress
- some medications
- certain foods
I glanced at the list of “no go” foods provided by my doctor. Seemed simple enough. I have a banana-spinach smoothie for breakfast every morning, so as long as that isn’t on the list, I figured it would be a piece of cake.
Okay, no big deal. I don’t need to eat breakfast. But I AM a woman, so as long as I can have the occasional piece of chocolate, I’ll be fine.
Whatevs, chocolate is overrated anyway. But, I live with an Asian man, and we eat lots of sushi, so there’s no way I can give that up.
Crap. I’m a southwestern gal, and we love our tacos, and avocado is like the official food of the state of California, so I’ll just load up on chips and guac.
Well, shit. You know what, that’s fine. I don’t need to eat, anyway. I’ll just get really drunk all the time.
FML.
I’ve been on the diet for about a month now. My blood pressure is lower, and a few other symptoms have improved, but there’s also something to be said for having higher blood pressure and being really drunk.
I’m just sayin’.
“One cannot think well, love well, sleep well, if one has not dined well.” – Virginia Woolf
Smell ya later.
– Linds
Love reading your posts! Can you please post those lists or send them to me? I’ve noticed certain foods seem to be a trigger for me, but I think it might be helpful to see if there are other things I should be avoiding. Thanks!
Hi Antonia, sure, send me an email at Lindsay@dysautonomiac.com and I will send you the list my doctor gave me. Also, one of my blogger friends, Jak, has a great site with a thorough list of foods: https://mastcellblog.wordpress.com/histamine-diet/
As if you don’t have enough hurdles with POTS, now you have to ditch your favorite foods! This bums me out! Good for you for having such a positive attitude about it but in this situation of sacrifice, I have to ask how hubby is dealing with it? And I don’t mean your possibly shorter temper and patience level. 😉
the BF is handling it quite well, although HE still gets to eat whatever he wants 🙂 i admit to having a little bit of raw tuna while on the diet and didn’t notice a reaction, but occasionally we have separate dinners if he wants something i can’t have.
Linds I feel your pain 😉 It’s 3 years down the line and I still miss tomatoes, cheddar cheese, bananas, cook-in sauces, candies, and would give my left arm for anything alcoholic. The good news is, though, that once you’ve done the initial few months of rigidly sticking to the diet and your histamine load is lessened I’ve found you can cheat a little bit now and then. I mean, who the hell can get through their menstrual cycle without chocolate?! OK, so you can no longer eat the entire box of chocolate chip cookies like you used to but the odd one is do-able. And I’m British therefore simply cannot get through the day without a brew, specially first thing in a morning. I don’t give a rat’s ass that tea is fermented, I’m drinking it!!!
i’ve already started cheating a little, but i’m quickly discovering what foods i can cheat with, and which i can’t. for some reason, peanuts make me have a reaction which seems odd because in the past i never had a problem with peanuts!
Jak, since you’re my mast cell expert, can you recommend a low histamine protein powder or meal replacement shake?
Strangely I react to Cashew nuts but not to Macadamia nuts so it’s worth trying other varieties and seeing how you do with them.
I’ve never used specialist protein powders so can’t really comment, though check anything you buy doesn’t contain soya.
There are lots of times I struggle to eat solid foods due to nausea so I do smoothies (coconut milk +fruit and veg) – I add crushed mixed seeds like flax to help boost protein. The only seed to avoid is pumpkin as pumpkin is high histamine. Green powders like spirulina are good too and are a good source of protein. Again best mixed in with a smoothie as they taste rank!
I have a lot of food issues…I’m fructose intolerant and allergic to wheat…ect.
I have interstitial cystitis too and have to watch what I eat for that.
So I have to be on a specialized diet. It’s hard.
I’m used to it, but eating out is such a challenge. Traveling…oh my goodness. Traveling when sick is a challenge anyway, but having to carry all my food is a real challenge. but better than getting sick from eating out while we are driving on a long trip.
They often say…when it doubt do without. Well when you are really hungry that’s a lot easier said than done. 🙂
Especially when I’m also hypoglycemic, if I don’t eat, I’m going to pass out. ha.
So, nuts and cheese are normally in my purse.
and I know I can stop at a grocery store and get a boiled egg…most stores have them now…or Greek yogurt, it is very low in lactose, so I can have that, the plain kind, a piece of allowed fruit. and I’ll get by.
Good luck my dear.
restrictive diets are hard.
diets to lose weight are not as hard at this.
Doing both is even harder. I’m doing that right now.
Cheers…oh maybe I shouldn’t say that, but neither of us can drink, so who cares.
Hi Wendy, thanks for your comment! Eating out is definitely becoming more challenging! I can see how it would be even more so when traveling. When I know I have something important to do that day, I try to stick to my “safe” foods so I don’t end up missing out because I get sick. I’m still learning what is “safe”, and I’m sure a lot of it is trial and error.
I feel your pain. This low histamine diet is so depressing . Did you do 23andme?
it is!
i have had the 23andme test, but am still learning how to interpret the results. did you have it done?
yes! i have an appt wednesday but I used sterlings app. This is all so draining as I’m sure you know!