It seems so unfair, over the last weeks PNH symptoms have flared up again and I have had to go back to the drawing board to try and pinpoint what may have triggered it off. I could put it down to all the stress of moving during the most frantic season of the year, things not working while the world was on holiday not to mention trying to stop the flu that’s trying to grip the country in a head lock trying to grip me too. I could, but I need to cover all bases here especially taking into consideration that it has also waxed and waned during this time.
So as part of my move into our new home I invested in some new bits and pieces to ramp up my healthy lifestyle gig. A pressure cooker to start making my bone broth in, some gelatin to heal the gut and liquid stevia so that I could wean myself off the sugar. I was good for the first week or so and then BANG!!!! Irritability, spasms, aches, tears, tantrums – OK I also cheated because when I feel bad I also eat rubbish – which I know has to stop – God help me please. But I have learnt enough about my body to be able to pick up what is and isn’t affecting me and begin to read how. Something was different and I prayed that it wouldn’t be the gelatine. I wouldn’t mind giving up the stevia, but the gelatin – I could use that to make all kind of wonderful things – plus it replaced the eggs which I can’t eat at the moment plus it was making my hair and nails grow.
I had previously made bone broth the traditional way in a stock pot, but I found that eating foods which were aged actually made me feel worse. It turned out, and who would have known it that I have an issue with histamines. Who even tests for that? Apparently, not doctors, it’s one of those things that you find out by accident. So, this meant that I had to say good-bye to a lot of the foods which are supposed to be healing for you in one fell swoop such as fermented foods which BTW also includes chocolate/cocoa noooooooooooooooo.
So I pulled myself together and began to erase some of my most favourite foods from my diet, after a while I found that I could eat some of these foods again every so often so I was very happy 🙂 . Someobody advised me that I could get past the histamine issue if I cooked my bone broth in a pressure cooker and then froze it so it didn’t decay – so that’s basically what I started to do as soon as I bought me my brand new pressure cooker. Food began to take on that yummy umami taste that only comes with bacteria breaking down foods once again. But then, all the spasms and fasciculations began to erupt and I wasn’t so happy anymore.
When this happens I always feel like I’m in a crisis, I buckle my seatbelt and hold on to the ride praying that it won’t last very long. But days became weeks and still no abating. Something clicked and I thought, it must be the stevia or the gelatin. Both are potential culprits. The stevia is alcohol based (sugar alcohols) which can probably cause some histamine issues and what I didn’t know then but I later realised was that gelatin is chock full of amino acids – hist-amine amino acids – get it. If it wasn’t bad enough that some people are histamine sensitive, some others are amine sensitive :(.
The sciency bit
Did you know that amino acids help regalute neurotramsitter function? Some neurotransmitters calm the central nervous system whilst others stimulate it. High on the list of those which excite the brain are proline and glutamic acid, both found in my red can of Great lakes gelatin. Glutamic acid is linked to glutamate, and glutamate to MSG – Monosodium glutamate so I began to think, what if this is a glutamate issue and not necessarily or soley a histamine one?
I mean most people react to MSG without even knowing it, but some people are just more sensitive to it. Some practitioners think that this is because their body is more alert to danger and fires off all canons to keep said person safe (although it doesn’t feel very safe). The odd thing is that many of the high histamine foods are also high glutamate foods, this could be because glutamate increases histamine levels. On the positive side it makes it easier to stay away from one set of foods instead of two sets, but on the other side you don’t know whether the issue is histamine or glutamate or other amine related e.g. saliclyates.
So I decided to dig out my recent food intolerance test and compare notes. I tested 3 antibodies IgA, IgM and IgG and based on the results I scored the groups between 0 and 9 – 0 being no reaction and 9 being the highest possible reaction (a score of 3 on each test). A score of 4 or above is very bad but even a score of 2+ isn’t so good either.
My 10 highest scoring foods were
- Corn – 9
- Cucumber – 5
- Tea (black, green) – 5
- Tomato – 5
- Wheat – 5
- Squash 4.5
- Cauliflower – 4
- Cocoa – 4
- Gluten – 4
- Grape – 4
All of these foods are high in amines, glutamate and/or saliclates. Even those which I scored 2 to 4 also contain foods high in these compounds, the interesting thing is that foods that I hardly consume at all e.g. tea and black walnuts also are very high in these compounds. This kind of tells me that I wasn’t reacting to the food per se but to the compund in it.
I need to continue on with the research but as for now, I just wanted to share this with you all.
There is a scripture that comes to my mind when I think about the complexity of the human body:
I will give thanks to you because I have been so amazingly and miraculously made. Your works are miraculous, and my soul is fully aware of this.
~ (Psalm 139:14)
It reminds me that I’m unique in creation and that means a one-size diet may not be best for me. It is my responsibility as a steward of God’s creation to look after my body that he has gifted me with to the best of my ability. Please join me in my next post as I continue to explore the possible link between amines and PNH.
I hope this has been a blessing