MCAD look back

I started this blog in April 2013, just over two years ago, so I thought it was a good time to have a look back at how my mast cell disease and HIT has fared.

I was diagnosed with HEDS in 2010 and my mast cell disease exploded in spring 2012 (although I’d had increasing symptoms for over a decade before that), with acute anaphylactic events after every meal, sometimes even after drinking water.  After much research I was convinced I had MCAD as a resut of my Ehlers-Danlos, and began a low histamine diet.  After four months the anaphylaxis stopped and the relief was enormous.  I also began to sleep better and stopped getting up every single night to pee which I’d been doing for several years, sometimes multiple times a night.

I had horrendous reflux, however, and in August of that year plucked up the courage to try H2 antihistamines.  I initially tried Zantac but it actually made my reflux worse and gave me awful brain fog to boot, so I switched to Tagamet (Cemetidine) which I was amazed to find I tolerated well and which greatly improved the reflux.  It also helped my chronic daily nausea and my upper back pain, which we think was due to acid burning the back of my oesophagus.

I saw Dr Seneviratne in December 2013 and received my official HIT and MCAD diagnoses.  He advised adding in an H1 antihistamine and again I was delighted to find I could tolerate Zyrtec liquid (Ceterizine).  I thought it would help my sore eyes, daily sneezing and hives but sadly it had no effect.  What it did do, however, was help my period pain which has been excrutiating my  whole life.  It also helped my stomach cramps and pain, helped with brain fog and improved my nausea even further.

I ticked along for the next 12 months.  I still had occasional mild reactions to random foods for no apparent reason, and sometimes felt weird after taking my H2 antihistamine, but all in all things were fairly stable.  Until Christmas 2014 when I realized the reactions after taking the Tagamet were getting worse and I had a full on anaphylactic event at the beginning of March this year.  I had to stop taking it and, despite trying other brands, couldn’t find another I could tolerate.  I also tried three different PPIs, eg omeprazole, and couldn’t tolerate those either.

For the first few weeks without the H2 my reflux was dreadful and the pain was hard to live with.  Thankfully, though, it’s settled down now and is at least bearable most days.  My nausea, on the other hand, is horrendous and as I type this I just want to puke.  In fact, I probably will as soon as I’ve eaten my breakfast because eating anything makes me sick as all hell.  I’m allergic to any of the drugs that might help this, so it’s pointless even discussing it with my GP.  I’m also not sleeping as well as I did, and my upper back pain is really troublesome.

I’m also back to reacting to foods.  The food doesn’t seem to matter, it can be any random thing.  One day I’ll react to shepherd’s pie, the next day I won’t.  One day I’ll react to risotto, the next day I won’t.  The hour after I’ve eaten anything is pretty miserable, with severe nausea, stomach cramps, blood pressure fluctuations, and just feeling ‘weird’ and not well.  It’s really starting to get me down, as I don’t know what to do about it.  I’m still on my diet and I can’t tolerate drugs of any description so I’m not sure where to go from here (if anywhere).

Then last month I had a reaction after my H1 antihistamine, so I’ve had to stop that as well.  I now feel more fatigued, brain fogged and more MEish/fluey than usual.  As you all know, I also had the worst period I’ve had in forever this month which I’m sure is related.

Dr S did give me a prescription for Sodium Chromoglycate but I haven’t tried it for two reasons: the first is that several of my friends have tried it and it’s made them feel dreadful; the second is that, even if I tolerate it now, you can guarantee that at some stage in the future I’ll become allergic.  It’s been that way with every drug I’ve tried in the past twenty years – I tolerate it for so long then, bam!, my body rejects it.  Bearing that in mind I really can’t see much point in even starting it.

So, things are pretty miserable at the mo and quite scary if I’m honest.  I wish I had better news for you all.  I have no idea why I’ve gone downhill again and don’t know if things are going to settle down, get worse or stay the same – I guess only time will tell.

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14 thoughts on “MCAD look back

  1. Teri Scherzinger

    Hi Jak! Have you heard of the supplement dao? It’s a digestive enzyme. I’m taking it and was also taking Allegra (H1 antihistamine) to control colitis from MCAD.

    After a crash I noticed how much better & less edgy I felt. I’m sure it was because the Allegra had cleared out of my system, I think I was reacting badly to the ingredient that prevent’s drowsiness. I came to this conclusion because I was in a clinical trial for ME one year ago that involved supplements & Ritalin, and it was a disaster for me. I dropped out after one month because I literally felt like I was being poisoned!

    Anyhoo, I decided to drop the Allegra & try the dao before each meal. It has been working for me. Only downside is it’s pricey. Here in the states $1 per pill. I buy it on Amazon.

    ❤ Teri ❤

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    1. Jak Post author

      Thanks Teri. I’m too scared to try DAO to be honest, as I react to supplements in the same way I react to drugs. Can’t even drink herbal tea or take a multi vitamin with reacting 😦

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  2. Glo

    I’m so sorry things have stopped working for you. They first had me try cimitidine which have me horrible reflux which I had never had before. Now just take a Claritin and my asthma puff once a day. The food thing is something I understand as well. Never know when I’ll react but my symptoms are no where near as severe as yours. I get the milder version. I think I am now reacting to the hot weather which I have always had a problem with anyway. However am going to start the diagnosis routine for fibromyalgia as I have many of those symptoms suddenly. I know they say these things aren’t genetic but my daughter has fibromyalgia and my son has many gut issues but won’t go for a firm diagnosis and just randomly tries weird diets that work for a bit and then don’t. I hope things improve for you again. I’m so grateful that I found your blog as it has been such a help to me to have the knowledge I’m not alone in this. Thank you for struggling through and writing even when you are feeling so bad. I hope the next post is news of improvement in your health.

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    1. Jak Post author

      Thanks Glo. There’s definitely a genetic component to EDS and mast cell disease (my mum has both I’m sure), so I can’t see why genes couldn’t be implicated in things like ME and Fibromyalgia. My immune system has always been weird right from a baby: I caught strange viruses like Scarlet Fever and got measles despite having been vaccinated. Good luck with getting the right diagnosis. Jak x

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  3. d

    Oh Jak I can’t even imagine having to go without my antihistamines! I feel for you. Are you able to take Benadryl? Not a great one for daily use for sure but it might give you some brief relief. This has been a challenging time for you and I hope you are able to find something that works! You handle all of this with such grace and strength, I find it truly amazing. Sending positive thoughts your way.

    d

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    1. Jak Post author

      Thanks d. I’m just giving up on trying to take medications of any description – my body just hates them 😦 Feeling a bit low if I’m honest – I get so tired of dealing with all this crap. Just have to take it one day at a time x

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      1. d

        I hear that – it’s such a struggle and you seem to get more than your fair share. Of course you would feel low, any normal person would faced with the ongoing challenges you face. You are such a strong person who is to be able to find a light to grasp onto to get through the rough days. That is the thing I find the most impressive about you.

        d

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  4. Lindsay

    what a rollercoaster! i’m so sorry to hear you’re experiencing a downturn and hope things get better soon. it must be so frustrating when medications that are supposed to help, that HAVE helped in the past, suddenly not only stop working, but make you more ill. gentle hugs!

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  5. Elizabeth Milo

    I’m so sorry I didn’t see this until now! Oh, this is awful. Regression is so scary when we have no drugs to help. What are your food reactions? Are they low level enough that you can push through or are you having to eliminate foods? I know you must feel defeated. I get panicky with no med options and with the thought that I’m not properly treating my conditions. Have tried foods that are (purportedly) mast cell stabilizers? Pea shoots, lovage, capers, thyme, nettle, apples etc…? Please keep us posted. I’Il be thinking of you X

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    1. Jak Post author

      Thanks EM 🙂 Some of my food reactions are worse than others, but I can’t eliminate anything as I have no clue what I’m reacting to – I can react to one food one day but not another. Wouldn’t know where to start 😦 I do eat mast cell stabilizing foods, though as you’ve now read I’ve found some foods I didn’t know about, like celery salt, so will start to include those. I’m also going to try sprouting my own pea shoots instead of buying from the supermarket, as the bought ones are usually half dead by the time they arrive! x

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  6. kneillbc

    Oh Jak!!! I’m so so sorry that’s happening! I started cromolyn the day before yesterday. It’s helping already- it seems to be calming down my digestive symptoms if I take it right before a meal. The Canadian drug is called Nalcrom, and they have put it in a capsule- and they recommend taking it out of the capsule. Because of who their target market is, they have used the least reactive things they possibly can- a tiny bit of soy in a pill will do me in (such as that which is in oral hydroxizine- a top eight allergen in an allergy pill…idiots).
    One thing- as you know, I react to a lot of meds too- but I realized that it was the ‘other’ ingredients most of the time (except steroids..they’re NASTY for me). I have finally found a doctor who thinks it makes sense for me to try the injection first….if it works, then I’ll see if I can tolerate another form- otherwise any effect from the drug might be over-written from the reaction it’s causing. I’ll be trying hydroxyzine (not the little green gelcap, the IM injectable) soon.
    The other interesting thing is that a few of things that I started to react to, then pulled, I can take again once I’ve been off it for a year or so! That happened with Benadryl for me- it got to the point where I was reacting to it, so I stopped taking it. About 6 months later (in March, my worst month), I was really struggling- so I tried a bit, and NO reaction at all…any chance you could re-test some of the things you have eliminated previously? (Very carefully, making sure you don’t die and then have your relatives sue me for giving you medical advice over the Internet…because I’m not fussed about you kicking off- just getting blamed for it 😜).
    As for figuring out foods a reverse elimination diet helped; nstead of only eating two things for a week and then add things in…. which is just far too miserable. So, what you do is remove something for a week (or you can even cheat a bit, and eliminate it mostly for four days, and then even tiny traces for three days). Then do an oral challenge like the allergist does- a tiny amount, if ok then a bit more, then a bit more, etc etc. The goal is to work up to a big serving of the stuff- but taking it slowly enough that if you do react, you aren’t going to be horribly ill. The hardest part is to not mess with anything else for the 24 hours before or 24 hours after, because you want to be sure that nothing else sets you off and muddies the results, as it were.
    I know how it feels when foods are being crossed off the list one by one, it’s a scary thing and I hope it reverses soon! I really hope that some combination of nalcrom, ketofifen, hydroxyzine, etc etc helps for you!!!
    Karen
    PS I just got caught up on your posts- my notifications decided to start going to a different e-mail address that I NEVER use when I upgraded to WordPress ‘pro’. I’m sure it changed a default setting somewhere, it should be simple to fix. I was beginning to get worried that I hadn’t seen a post from you in a while!

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    1. Jak Post author

      LOL Karen – if I kick the bucket I’ll make sure to tell everyone it really wasn’t your fault 😀

      I’m sooooooo tired from the whole being sick thing I’m doing nothing atm – I can’t even be bothered to think about it :-/ But I’m sure when the symptoms get worse, as I’m sure they will, I’ll give some of your suggestions a try so thanks for posting 🙂

      Glad you’ve got your notifications sorted out – it’s freaky when the world suddenly goes silent! And I’m *delighted* that the SC seems to be helping you, that’s brilliant news 🙂 🙂

      Jak x

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      1. kneillbc

        Of course- like five min after I posted I was thinking, of course, Jak won’t want the injections….d’oh! But you get my thought.

        I understand, completely about not wanting to ‘do’ sick right now. I think it’s actually adaptive for people with chronic illness to go through cycles where you focus on your health, try new things, look into new treatments and tests and so forth. Then you have to take a break from it. I know that some people in my life get frustrated with me- the ‘Well, if you haven’t heard from your doctor, keep calling him until you get an appointment!” or some other such encouragement. You have to live a little in between- and at some stage the balance this the other way again, and you kick yourself for not doing x, y, or z. But let’s face it- being sick is a full time job. A job you never wanted, never applied for or trained for, you’re unsuitable for, and one you can’t quit- even if you are awful at all the paperwork. You just can’t do a job you hate all the time; we all need to time off! Otherwise why are you doing all the fighting?

        I’m so glad that you are taking the time to stop and photograph the flowers- you have an excellent eye- you can slow down a moment until it stops for a photograph, which is very special.

        I’m considering becoming a sun-free breatharian. Want to try with me? 😜.

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