Let me set the record straight

I am not a mast cell doctor.  I am not a nutritionist.  I am just a sick person doing my best to get through the days.

A comment was made on my blog recently that many of the recipes on my site contained histamine producing foods and the commentator wanted to know on what I was basing my information.  My gut instinct was to tell her that if she didn’t like my blog she could bugger off and read someone’s blog she did like – seriously, I hate whingers.  But I appreciate this didn’t answer her question, so I’m going to answer it in this blog post.

I am just a regular human being going through a tough time, dealing not solely with histamine issues, but also with a genetic connective tissue disorder, a broken nervous system and a broken immune system.  I live with symptoms every day which could fell a horse and I do it alone without help from anyone.  Some days I’m so ill I actually pray to die, because after living with all this for 20 years I’m really, really tired.  Other days I fight with every cell in my body to get better.  I was bedridden for 10 years, totally dependent on others for basic daily living and nearly died.  Through 4 years of herculean effort I am now able to walk my dog every day of the year come hail or shine and to live independently, despite the fact I still have all the diseases which caused me to become bedridden because none are curable.  I must be doing something right.

I’m a patient, not an expert – I state this over and over again throughout my blog.  I also state that my blog is my expression of a personal journey – I never give advice because I don’t know you or your medical history and I’m not qualified to give advice.  If you want to have a go at the diet I’m following I hope it helps you as much as it’s helped me, but I totally understand if you think it’s not strict enough or contains things you can’t eat, or don’t like, and I hope you find another diet which is more suitable for you personally.

I don’t want to restrict my diet too much for the simple fact that my appetite is already really poor.  I feel nauseous 24/7 and some days just breathing is too much effort.  If I cut out every single food item I’ve ever liked I know for sure I’d become anorexic.  As it is I’m already underweight.  I don’t have the energy to spend hours in a kitchen every day and I don’t have the will to eat cardboard foods that I can’t stand.  The reaction from some people to this is going to be “well, if you won’t cut out everything (they’re usually referring to wheat or dairy) you obviously don’t want to get better and I’m not surprised you’ve still got hives”.  To those people I say this:

  • I know people with Ehlers-Danlos whose GI tracts are so badly affected they have a PICC line directly into their stomachs.  Low histamine foods will not cure my EDS and it’s my EDS which is causing my mast cell issues.
  • I have M.E., which means my immune system is faulty.  No-one in the world knows what causes M.E..  Low histamine foods will not cure my M.E. – it’s an acquired neuro-immune disease with probably a genetic pre-disposition.
  • People with dysautonomia can also have severe GI issues, as the gut is regulated by the autonomic nervous system.  Low histamine foods won’t cure my dysautonomia which was caused by contracting meningitis in Africa and nearly coming home in a coffin.
  • But the most important thing I’d say is this: Within 4 months of starting my version of a low histamine diet I stopped having reactions after I’d eaten.  No palpitations, no anxiety, no head-pain, no fainting, no muscle spasms, no flushing, no need to lie down for an hour until the symptoms had gone.  These symptoms were the whole reason I started the diet in the first place and they have completely resolved.  So, whether the diet is perfectly low histamine or not it’s obviously low enough histamine for me to reach my goal.

Yes, I still have lots of symptoms which are probably down to misbehaving mast cells.  But MCAD isn’t curable by diet.  The best most MCAD sufferers can hope for is the lessoning of some symptoms through a combination of diet, supplements and drugs and even then there is likely to be symptom break-throughs or periods where nothing seems to work.  No-one knows what causes mast cell disease and there is no cure.  If it were as simple as just not eating high histamine foods we’d all be doing it and MCAD wouldn’t exist – if only!

Advertisements

10 thoughts on “Let me set the record straight

  1. addercatter

    I applaud you for handling this the way you did. I’m super happy you have researched, attempted, and succeeded to find a way to help some of your symptoms, and that you have the energy and courage to wwrite about it for yourself, and helping others along the way. You’re an inspiration. I love your blog just the way it flows from your mind… don’t change that for anyone!!!

    Liked by 1 person

    Reply
    1. bertieandme Post author

      Thanks so much 🙂 I know I’m too blunt for some people, but you can only be yourself can’t you and people can either take it or leave it! I’d like to thank *you* for being such a loyal reader of my blog and sharing in my journey, it’s more appreciated than you know x

      Like

      Reply
      1. addercatter

        I think we help each other, we understand what we both go through due to our illnesses in a way others couldn’t possibly be able to.
        I do know the appreciation you feel, because I have felt the same way.

        Like

        Reply
  2. Melissa Picchini

    Those who judge you need to look for their own solutions and stop expecting you to serve their needs. Thank you for your posts, I appreciate what you do.

    Like

    Reply
  3. Helen

    I am so grateful to have been pointed to this blog. Your no-nonsense approach suits me perfectly and I really appreciate that you have shared your information to benefit others. Me!
    The problem with the internet is that it provides a virtual soap box for a whole lot of people who would otherwise be left to bang on at Flinders St Station (sorry I’m an Australian) while people hurried past with their heads turned. Sadly, some of them must have found your perfectly sensible blog

    Like

    Reply

Leave a Comment

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s