I thought following a low histamine diet would help my rampant heartburn – how wrong can you be?  It’s absolutely horrendous and feels like there is a man with a blowtorch living in my gullet.  I am on fire from the tip of my tongue to the pit of my stomach and everywhere in-between.  My mouth feels like I’m living on a diet of chillies and the constant taste of acid in the back of my throat is truly disgusting.  Nothing I do calms the heat.

I settled down to go to sleep last night at about 11pm but the pain was just so intrusive I couldn’t nod off.  I was tearful and exhausted and had no way of alleviating it.  The bed head is already elevated 6″ off the ground which in theory should help stop acid from running back into my mouth at night (it clearly isn’t working), and I’m taking extra doses of Gaviscon Advance which should be helping neutralize the acid (I might as well be drinking water for all the good it’s doing).  I know I need to try some H2 antihistamines, like ranitidine, to actually reduce the amount of acid my stomach is producing but am so petrified I’ll react to them I’ve been putting it off for about 12 months :-/  Not just because of a potentially negative reaction (which is bad enough and can make me ill for weeks, sometimes months), but for the mental torture that if I do react I’ll just be stuck with reflux for the rest of my days, the thought of which spins me into quite a deep depression (mind you, I’m already quite depressed with the pain :-/ ).

I also don’t want to take any drugs at all before I hear back from the Immunologist.  He mentioned a 24 hour N-methyhistamine test, and if he requests that in his letter to my GP I want to do it while my stomach (and therefore mast cells?) are playing up.  It will be 2 weeks on Wednesday since I had my appointment, so I’ll chase my GP up then if she doesn’t contact me first.  Not only will I get to hear what my actual diagnosis is (which will be wrong in any event and I’ve already requested a second opinion from a mast cell specialist in Manchester) but I’ll also get to know the results of my tryptase blood test (the test for Mastocytosis).  Not that I think I have Mastocytosis, as people with Ehlers-Danlos Syndrome are prone to Mast Cell Activation Disorder not Mastocytosis, but it will still be interesting to see how abundant my mast cells actually are.

I feel like I spend half my life waiting.  Waiting to see my GP.  Waiting for my GP to refer me to a consultant.  Waiting for my appointment to see the consultant.  Waiting for tests, scans, X-rays, blood work.  Waiting to see my GP for the results of said tests.  Waiting for diagnosis.  And then starting the process all over again because either the diagnosis is a pile of crap, or I’ve started with another symptom which needs to be investigated!  They say life is a journey, not a destination.  I’d prefer just to hurry up and get there so I can jump in the pool 😉 .


8 thoughts on “GERD/Heartburn

  1. Doozlygirl

    Have you tried sodium bicarbonate (baking soda) in water? I keep a small container near my bed and put into my water when I awaken with that horrible burning in my throat/chest. I spent a year on Zyrtec, Zantac and other meds to discover I had to “fix” my gut, so avoid PPIs and try to avoid the H2s, as they mess with the pH of the stomach and make it favorable for all sorts of unwanted critters.

    I am now focussing on healing my leaky gut by taking a good probiotic, digestive enzymes, bone broth, eliminating processed foods/dyes/preservatives/allergens (not hard since I anaphylax from those) and increasing my dietary nutrient intake with non-inflammatory whole foods. I was managing fairly well and had successfully halted the GERD until a recent MCAS flare, so going back to basics again.

    I recently read that Dr Miner, a GI mast cell specialist in the US, stated that 40 percent of IBS related cases is actually due to mast cell reactions. Interesting take, since most of us have that diagnosis as well.

    Thanks for the blog. Keep writing.

    Best wishes.


    1. bertieandme Post author

      Thanks for taking the time to comment Doozlygirl 🙂 . I take Gavison Advance 4 times a day, which already contains sodium bicarbonate – it does help, but I’m going to need something else, it’s just finding something I don’t react to.

      Like you I was also diagnosed with IBS (until I discovered I had Ehlers-Danlos which explained many of my gut problems). I’ve said for donkeys years that there’s no such disease as IBS – if your gut is “irritable” it’s irritable for a reason, and we need to find the reason! Wouldn’t surprise me at all if mast cells were involved.

      Jak x


      1. josieiamastcom

        Hi Jak, mast cells are involved in ibs esp diarrhoea dominant . Research strongly backs this up now . Some Drs are using nalcrom -a mast cell stabiliser to treat this with success . I have always been of the same mind as you that it was irritable for a reason . A mix of h1 and h2 blockers is also useful .Those with eds ive noted don’t often do well with rnaitidine but do better with pepcid- i’m reading to work out why xx I hope your well for you


    2. Stephanie

      I think I have leaky gut too. Can I ask if you’re seeing a practitioner to help you with this? I’d like to know the protocol. Thanks.


  2. josieiamastcom

    Hello 😉 Im Josie and have new blog here on my mast cell disease xx Those with EDS have problems with the closure at the top of the stomach -called a sphincter .Which doesn’t close causing acid to leak up .To the mouth ,irritating the throat and airways and sinus’s. So if it hasn’t been done it would be very valuable for you to have this assessed and then to consider a procedure to fix it .i don’t have eds but am aware of many of the issue due to working with eds leaders online and talking extensively to those online . Have you tried ppis ? – omperazole, lansoprazole .this can reduce the acid . Overall there are absolutely things that can be done to fix this acid problem for you 😉 I would suggest a gi aso check you for carciniod syndrome if it hasn’t been excluded . Once this is done certain mast cell stabilisers are useful to help the burning you describe .

    The burning is gastritis and is due to inflammation, ulcer or bleeding so a camera down is needed to see exactly what is happening xx In the oesophegus-eating tube burning with acid can cause barrets oespohegus which can become a cancer over time so needs identifying and checking on x but responds well to treatment avoiding this

    In talking with those with eds , a proportion don’t do well on ranitidine in particular. i dont know why .I’m reading to try and work it out . Those that will tolerate a H2 do better on pepcid . Some cant do any .

    In mast cell specifically non drug ingredients in medications inc fillers and colours etc can cause issues with medications.This means with the right preparations they can have meds that they didn’t tolerate previously. This doesn’t apply to anaphylaxis as in that case no further contact with the substance is advised . But trends can be seen in foods which arent tolerated . I get anaphylaxis to caramel colouring and annetto- e160. but from corn flour get bowel symptoms increasing to anaphylaxis . I found all this out the hard way . But with some discussion I hope to help you aviod this issue for you 😉


    I know the worries with long term health probs of things never getting any better .I live day to day sometimes minute to minute to aviod this .



    1. bertieandme Post author

      Hiya Josie, nice to see you posting on my blog – I know you from the Inspire EDS forum! 🙂 🙂

      I’ve had the camera down etc. and all they found was gastritis. No mention of a hernia or problems with sphincter closing, though I’m convinced I *do* have a problem with the sphincter closing!

      I know all the drugs to try but react so badly to drugs it’s a job finding things I can take. I’ll keep trying though.

      What’s the name of your new blog and I’ll go for a look 🙂

      Jak x



Leave a Comment

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

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

Google+ photo

You are commenting using your Google+ 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 )


Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.