When I realised I may have Mast Cell Disease (MCAD) I could have tried some over-the-counter anti-histamines, as this is the first line of defence for this disorder. But the main reason I’d researched MCAD in the first place is because of the horrendous reactions I have to just about all medications, so the thought of trying a new drug, alone, without any kind of medical supervision scared me half to death. 15 years ago I would have been brave enough, but 20 anaphylactic drug reactions later and I’m now the Cowardly Lion.
The other main treatment for MCAD is to follow a low histamine diet. This I could do. At least I thought I could, until I looked online for a diet to follow. The information ‘out there’ was so conflicting it made my head spin. In the end, the only ingredients they all agreed on were fresh meat, potatoes (no agreement on sweet potatoes I hasten to add), green veg (as long as it wasn’t spinach), apples, sugar and water. You might as well kill me now, particularly as I’ve been pesco-vegetarian for 25 years and aren’t really that keen on apple!
Eventually I settled on a low histamine diet I thought I’d be able to follow, although I do still cheat and am not really strict on avoiding every tiny addition of vinegar in a jar of sauce, or every single additive. I absolutely refuse to stop drinking tea. And during my period I’m evil unless I can eat at least one bar of chocolate (though my concession is to choose white over milk, my reasoning for which probably makes no sense whatsoever!).
The first 3 weeks of the diet were horrendous. I suddenly couldn’t eat any of my favourite foods (I drooled just thinking about a huge plate of Aubergiene Parmigiano), which wouldn’t have mattered so much if I’d suddenly felt wonderful. But I felt like absolute crap.
I live with exhaustion every single day of my life due to having both ME and HEDS, but at the start of the low histamine diet it took on a whole new persona. I felt sleepy every second of the day. It wasn’t an unpleasant feeling – more like someone was regularly slipping me a very relaxing valium – but I got absolutely nothing done and all I cared about was lolling about on the sofa watching daytime tv. Thinking about it logically I suppose it could have been anticipated. Mast cells, when they behave badly, produce histamine which in itself is an excitable neurotransmitter. Histamine in turn produces adrenalin, the hormone which activates the “fight or flight” response, or gives you added energy during exercise or times of stress. It makes you feel extra alert and unable to relax, that’s its job. If, as I suspect, my mast cells had been rampaging for many years I’d been living with extra histamine and adrenalin floating around my body, and giving me false energy, for a lonnnng time. Then suddenly, as my histamine levels, and consequently adrenalin levels, reduced my body was finally allowed to be as exhausted as it really was, and trust me when I say my body is truly tired.
The upside of having less adrenalin was that I slept really well. I’ve had disturbed sleep for 20 years, but at the start of the diet the depth of my sleep increased and I woke feeling more refreshed than I had in two decades. Silver lining :-).
During those first 3 weeks none of my other symptoms subsided. I didn’t expect to suddenly go from sick to well, as both ME and HEDS are complicated diseases the symptoms of which would be completely unaffected by any kind of diet as they aren’t diet related. But I had expected some improvement in reflux, nausea, stomach cramps, migraines and ‘brain fog’. No such luck. In fact I had the worst run of migraines I’d experienced in 3 years and my reflux was ratched up a couple of notches too! I have no explanation for this.
I was so fed up at the end of week 3 of struggling to find things I could eat and missing my usual favourite meals, and having seen no improvement whatsoever, I decided the diet wasn’t for me. So that night, feeling ill and shattered, I cooked up a junk food storm of frozen Chicago Town pizza and a huge plate of frozen oven chips with lashings of tomato ketchup. God it tasted good! My body, on the other hand, wasn’t quite so impressed. Within 20 minutes I was flushed bright red, my heart was going like the clappers, I had pins & needles over my entire body, waves of sensation I simply cannot describe, and a very strange feeling in my head. Plus I felt sick, sick, sick and my stomach was in complete cramp. I hadn’t had a reaction this bad in several months and it was obvious that going back to my usual eating habits was now simply out of the question. It was very demoralising and I did want to cry at the unfairness of it all.
After another 2 weeks on the diet, however, I did start to see some improvement in various symptoms. The overwhelming exhaustion diminished, and in its place came a small amount of energy. Not the wired, frantic, running-on-empty energy I was used to, but a calm, relaxed, more ‘normal’ energy which felt wonderful. I also noticed my head was clearer and I didn’t feel like I was permanently half asleep. I’m not saying my brain fog has gone, just that parts of my brain do feel less clouded.
Nausea diminished, and I now only feel sick for about 30 minutes after I eat rather than for the entire day. My bowel movements, on the other hand, are reduced to every 4-5 days due to the lack of fruit (particularly prune juice) and nuts (a great sources of fibre) I now consume. You can’t win ’em all!
My mood has also improved. I’m a bouncy, outgoing, sociable, humourous kind’ve girl who really doesn’t sweat the small stuff, but for decades this has hidden a chronic, low level depression that I just learned to live with. I now know that histamine is a powerful neurotransmitter which alters mood and interacts with other mood altering neurotransmitters such as seratonin and norepinephrine. I certainly seem to now have an inner bubble of happiness that hasn’t been there in a very long time and, whilst I’m not saying everything in my mood garden is now rosy, I definitely feel lighter of step.
On the downside, the pins & needles and general nerve tingling that I have constantly all over my body, particularly in my feet and hands, has actually gotten worse :-(. I have no idea why this should be and can’t even come up with a tentative working hypothesis. It’s like parts of my nervous system have calmed right down, while other parts have ratched right up to compensate. I’m not impressed.
I’ve now been on the diet for nearly 7 weeks (I started on 3rd March) and can honestly say I’m glad I stuck with it (well, let’s face it my body gave me no choice!). I’ve noticed, however, that while I feel more energetic during the day my sleep isn’t as good as it was during the first few exhausting weeks on the diet and has gone back to its usual disturbed self, which is rather disheartening. Saying all that, I have introduced a couple of foods in the past few weeks (cashew nuts and bananas) and reacted so badly to the nuts I stopped them after 3 days. The jury is still out on the bananas! I re-introduce one food per week and, especially if I react to it, don’t start another new food until the following week to give my body chance to get over the reaction. Nausea is still pretty good, I haven’t had a migraine in 3 weeks, and I still feel much more relaxed and energetic. However, my nervous system is still berserk and for some reason my heartburn is worse than its been in months *sigh*. This is where a trained dietician, with an interest in histamine allergy, would be worth their weight in gold!