Confused.com

I’ve never claimed to have any answers to my, or anyone else’s, health problems and freely admit I just muddle along with the rest of you in the land of The Confused.  And there is no more confusing a world than that of histamine, as I’m sure many of my readers have discovered.

Having said all that, I’ve been diagnosed with both Histamine Intolerance (HIT) and Mast Cell Activation Disorder (MCAD) for 4 years now and have learned and made discoveries along the way so thought I’d share this knowledge, for what it’s worth, with you.

When I was first diagnosed I knew I had to start an elimination diet because I was having anaphylaxis every time I ate.  Naively I just thought there’d be a foolproof diet online that I could follow and all would be well.  Oh, if only it were that simple!  I did, indeed, find diets online that claimed to be ‘low histamine’ and I followed Dr Joneja’s because she seemed like an expert and the diet was comprehensive………but it was a nightmare.  As a pesco-vegetarian it cut out all the foods I’d lived on all my life and didn’t tell me what to substitute the excluded foods with.  Having been sick with M.E., which decimates your digestion, for years before my mast cells exploded I knew that lack of good nutrition causes as many issues as exclusion diets solve, so I instinctively realized that simply cutting out so-called “high histamine” foods without substituting foods with equal nutritional value would be disastrous.  Bearing that in mind, I set about trying to find alternatives, eg I cut out tinned, chopped, tomatoes in recipes but substituted them with a home-made red pepper sauce.  I cut out Cheddar Cheese, but substituted with Mozzarella cheese.  I cut out fresh fish, but substituted with frozen fish which I discovered was gutted and frozen on-board the ship thereby reducing its histamine load.  I cut out spinach, but substituted lamb’s lettuce.  And so on.  It took about a year but I finally came up with a diet which was still balanced and nutritious but low in histamine (or so I thought!).

This is what I learned: if you exclude a food, try to substitute it with a food of equal nutritional value. 

After 4 months on a ‘low-histamine’ diet I stopped having anaphylaxis every time I put food in my mouth and the relief was enormous.  But many of my symptoms were still present, eg. hives, insomnia, itchy skin, nausea etc.  It took a while to work out what was going on, but I discovered that mast cells react to all sorts of things, not just what we eat, and that realistically I was going to have issues for the rest of my life.  In particular I was in my mid-forties and had begun peri-menopause and I learned that hormones have a massive impact on mast cells.  There was nothing I could do about the situation and 4 years down the line I’m still suffering the effects of wildly fluctuating menopausal hormones on my histamine load.  In addition, I react badly to stress (which with 2 sick aging parents to look after can be unavoidable), extremes of temperatures, my dog, some pollens and simply doing too much and getting too tired.

What I learned: I could not manage my MCAD using food alone.

My next big revelation was that all of the advice on low-histamine foods online seemed to contradict each other.  It took a lonnnng time to figure out why, but eventually I discovered that no-one was testing food for its histamine content and that all the lists online were based on nothing but guesswork.  I was devastated by this revelation and everything I thought I’d learned about food and histamine came crashing down round my ears.  It was then I really started to look at where the information online was coming from and wrote my ‘Histamine in Food: the Evidence’ page.  Even popular histamine writer The Low Histamine Chef can’t find a lab that will test for histamine in foods and with all her connections if she can’t find proper info on the histamine content in foods it doesn’t exist.  That doesn’t stop people occasionally coming on my blog and telling me I’m talking crap and that this food or that food is high or low in histamine, not realizing that far from me being wrong, they are wrong and when I ask them to back their claims up with hard data they never can.  Bearing this in mind, and finding sticking to a rigid low histamine diet really difficult, I started to experiment with re-introducing certain foods.  I still exclude foods which I know have been properly tested and found to be high in histamine, eg. hard cheese, aubergienes, tinned fish, soya but now eat normal yeasted bread, beans and pulses (including red kidney beans as there is not a scrap of evidence they are high in histamine), and my symptoms are no worse than before.  Having said all that, my re-introduction of chocolate was a disaster and definitely increased my histamine load, so it is still forbidden *sob*.

What I learned: only a handful of foods have been tested for their histamine content.  We have no clue whether most fruits or veg are high histamine.  So-called low histamine diets are far too rigid and unnecessarily cut out highly nutritious foods.

My next big revelation came from my lovely readers, who would write and say that although I might be tolerating lentils, or wheat, they reacted to them.  This totally threw me, so again I researched what might be going on and discovered that we are all simply individual and will react differently to our friends.  In addition, just because we’re reacting to a food doesn’t mean it’s because it’s high in histamine.  You might also have a problem with nightshades, fructose, gluten, lactose, salicylates or any number of other components in foods, whereas I might not.  This is why I don’t give advice on my blog.  For a start I’m not qualified to, secondly I don’t know you and thirdly we are all so different that it would be totally pointless in any event because what works for me might not work for you.

What I learned: we are all individual and our mast cells react differently other people’s.

When I was first diagnosed I read everything I could about MCAD………..and found that much of it was totally contradictory to my own experience.  For example, on Yasmina’s Healing Histamine website is this post about Melatonin and how research has shown that it counter-balances histamine.  I’ve had horrendous insomnia because of my illnesses and years ago tried a Melatonin supplement, which gave me one of the worst mast cell reactions I’ve ever experienced.  Wondering why, I had my melatonin level checked by a lab and discovered it was  actually far higher at 3am than a healthy person’s, despite the fact I was wide awake!  So melatonin doesn’t appear to be reducing my histamine levels, which flies in the face of this research.  The research does say, though, that mast cells produce melatonin which makes more sense – my mast cells were rampant and this would obviously mean a high melatonin output, but in my case this wasn’t a good thing!  Some of the histamine writers online are treated a bit like God and their every word taken as Gospel, but trust me when I say if Dr Afrin doesn’t have the answers yet no-one else does either.

What I learned: don’t believe everything you read.

My experience with MCAD is that it is a highly fluctuating condition, which changes over time.  For example, when I was severely ill with M.E. (which as my readers know I think is some kind of mast cell disease) I was highly sensitive to chemicals, eg. I couldn’t bear to read a newspaper because the ink used in the printing gave me asthma-type symptoms.  I couldn’t tolerate normal paints, hairspray, perfume, bleach and any number of other substances.  However, as my M.E. started to improve my chemical reactions also improved and now I don’t have any problems with smells.  My drug reactions started off fairly minor, with me reacting to just the odd medication, but over the years this has gotten worse and worse to the point where I have anaphylaxis to just about all drugs.  To make matters worse, I can start off tolerating a drug really well but 12 months, or 6 years, or 20 years down the line suddenly have anaphylaxis to it and be unable to take it ever again.

What I learned: things can change, for the good or the bad.

When I was diagnosed with MCAD I thought there would be information out there in cyberspace that would have all the answers and it came as a huge shock to discover that that information simply doesn’t exist.  This is a new area of medicine and even leading Doctors in the field are still finding their way around the complexity of mast cells and the havoc the chemicals they release (like histamine & prostaglandins) play on our bodies.  If the experts don’t have the answers yet, no-one else does.  Not me and not other bloggers or writers, and if they pretend they do they’re fibbing.  Much of the research cited online is conducted on animals or in a lab, and this often doesn’t translate to human beings.  We are decades away from any real understanding of mast cell disease and when it does happen you can bet your life the answer won’t lie in whether or not you eat Pak Choi on a regular basis!  There are diets which may help, but absolutely won’t cure you.  There are drugs you can take which might help, but won’t cure you.  There are supplements you can take which might help, but won’t cure you.  There are ways you can live your life which might reduce symptoms, but again won’t cure you.  And that’s because MCAD is currently a chronic, incurable disease.  Sorry to be the bearer of bad news 😦

What I learned: MCAD may, or may not, be manageable but certainly isn’t currently curable.

My journey with mast cell disease is ongoing, but I’ve learned a fair bit over the past few years.  You’d think this would make me more knowledgeable, but in fact it’s been the opposite and there are days I feel more confused than ever!  My biggest revelation has been that we are all basically in the dark……Doctors, Researchers and Patients………because our knowledge of MCAD is in its infancy and, much as we’d all like it to be different, no-one really has the answers to our questions yet.  Which makes me feel kind’ve adrift and alone and scared.  But I’ve had M.E. for 2 decades too and no-one knows anything about that either and I’ve survived….just.

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8 thoughts on “Confused.com

  1. Sarah

    Morning 🙂Just a thought, could your melatonin levels be high during the day causing the ME symptoms. Have you had them tested then? Maybe the high volume of histamine in your system affects the pineal gland that produces the melatonin. Maybe for others the initial viral infection also affects the pineal gland.
    My brain hurts now but I will look at this later

    Thank you for highlighting melatonin supplements, my 17 son cannot sleep without Taking Nytol, the blue box. The doctors won’t give him anything. He is body conscious so wouldn’t let me look for long, but I think he has the mastocytosis rash on his chest and back and now he’s finished his exams, I will take him to the doctors. I have a small window to go to sleep in. (10-10.30pm) if I miss this then I’m screwed.
    Sorry, also, what exactly happened when you took the melatonin? It would be helpful to know as I may try him on some supplements and would like to know what bad signs he should look for
    Jeez, I’ve just looked up the ingredients of the blue Nytol and it’s a antihistamine!

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    1. Jak Post author

      Hi Sarah

      My melatonin levels were normal at 3pm which is all a bit strange. I react the same way to all drugs, ie classic anaphylaxis symptoms of flushing, crashing blood pressure, increased heart rate to compensate, muscle spasms, pain, vomiting etc. The difference with the melatonin reaction was that I also felt like I was falling off a tall building over and over and over again for hours – very unpleasant. However, I react to drugs in ways most people don’t so don’t let my experience put you off. Many of my friends take melatonin without issue and swear by it.

      Jak x

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  2. Bea Ravn

    Excellent post Jak, thoughtful and comprehensive, thanks.
    Have you ever tried any medication for the MCAD? If so did it help at all? Did it help the MCAD symptoms but not the ME symptoms? Same question to anybody else out there, with a dual diagnosis of MCAD and ME.
    I have both diagnoses and am currently trialling an antihistamine + sodium cromoglycate + vitamin C cocktail for the MCAD. After a few weeks there was a notable improvement in the more classic MCAD symptoms (itching, dermatographia, flushing after eating, etc) but after a few months still zero improvement with the classic ME symptoms (PEM etc).
    Anyone else willing to share personal experience with this? I haven’t been able to find any research on this, likely because it doesn’t (yet) exist. Thanks.

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    1. Jak Post author

      Hi Bea

      I react so badly to drugs that I’ve struggled to treat my MCAD. I was initially on the H1+H2 combo, but became allergic to the H1 and then the H2. I’m now on a different H2 (for stomach acid) and tolerating that OK so far but then I tolerated the last H2 for eighteen months before my body rejected it. Got a script for Sodium C but too scared to try it after a friend of mine had a terrible reaction to it :-/ Even when I was on the H1+H2 combo it did nothing for my hives or itching, but my flushing, insomnia and constant weeing definitely improved, ditto nausea, intestinal pain and back pain.

      No effect on my M.E. though, in particular brain fog or PEM. I suspect the mast cell receptors involved in M.E. are H3 and H4, and as yet we have no drugs for those as far as I know, though that’s only my pet theory and hasn’t been backed up by any research (as you say, no-one is researching mast cells and M.E. in any meaningful way sadly).

      Jak x

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  3. Karen, The Walking Allergy

    Preaching to the converted here! There is one source of information that hasn’t been wrong yet. My body… Our bodies do all sorts of weird and wonderful things, but we are all SO different. The only thing I can trust is myself. I get why the allergist gave me a funny look when I said “I take epi when I know the reaction will progress out of my control.” How do I know? I don’t know how I know, but I do. And if I waited to fulfill the ‘official’ criteria I would probably not have lived this long. I’m a walking pharmacy, unlike you. If either of us tried to follow the other’s treatments, it would not be a pretty scene…

    ‘There’s no such thing as a standard approach to MCAS, because there’s no such thing as standard MCAS.’ (Ooo. Gonna have to remember that one! Along the same lines as “You can’t apply norms to me, I’m not normal.”) 😉

    Karen

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  4. Brian

    Hi

    Sorry to here of your issues with histamine. I myself have battled with a mast cell disorder for the past ten years and can understand the frustration of finding reliable information, mast cells sometimes seem to have a mind of there own and often foods that I have been told to eliminate have actually helped me.

    As you probably know there are two types of mast cells in the human body (connective tissue mast cells and mucosal mast cells), they react very differently to triggers and medications, they also release different mediators. For me I have an issue with mucosal mast cells but it sounds like your issues are with connective tissues mast cells.

    After 10 years of trial and error the things for me that have helped are

    Theanine (safe with few side effects) there are study’s on it for mast cells
    Optizinc monomethionine 30mg
    Probiotics (massive improvement, Lactobacillus acidophilus and Bifidobacterium lactis
    Lorazepam (really helpful for flares but i don’t like taking it long term, probably the most effective treatment)

    Ive had tried sodium cromoglycate and it made me feel horrible
    Quercetin did nothing
    pentassa did nothing

    Ive tried hundreds of other treatments and would be happy to share further info

    I still have really bad days/weeks but have a bit more of a handle on how to control it when it gets bad.

    All the best

    Brian

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    1. Jak Post author

      Thanks for the comment Brian, though sorry to hear you also have mast cell disease. You’re right in that mine is probably connective tissue related – Doctors who work with Ehlers-Danlos patients are finding that we have a massively increased risk of MCAD compared to the general population. This is thought to be because our connective tissue is faulty, which in turn seems to make the mast cells living within it faulty. And from contact with other EDS patients, what works for MCAD in the general population often doesn’t seem to work for us for some reason possibly because there is a different mechanism at play in the different groups.

      Jak

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