My Mast Cell Journey


Until 2011 I’d never heard of Mast Cell Disease, Mastocytosis or Mast Cell Activation Disorder (MCAD), let alone have any inkling that I am suffering from the disease myself.  It was only when I was diagnosed with Ehlers-Danlos Syndrome (EDS) in 2010 and started accessing EDS forums online that I came across the symptoms of MCAD and had several light bulb moments.

I’ve had Dermographism (also known as skin writing) for as long as I can remember.
Photo of Dermographism on the arm
Until fairly recently I had no idea other people’s skin didn’t react like mine and come out in itchy wheals when Photo of Dermographismthey scratched themselves, pressed their skin or wore tight clothing.  In order to support my joints due to my HEDS I have to wear various braces, particularly if my joints are in active flair-up.  The photo here shows what happened when I used a fairly basic neoprene elbow support (available from any chemist).  You can see the red itchy wheals from the pressure of the support on my skin, plus a hive has formed in the shape of the company logo which was printed on the neoprene.  Needless to say, despite trying various kinds, I still haven’t found an elbow support that doesn’t cause my dermographism to go bonkers.

As a young child my lips were constantly red and chapped in winter, sometimes in a huge line right down to my chin.  During puberty I developed duck lips where, in cold and wet weather, my lips would swell up and look like I had a trout pout.  My GP thought I was completely nuts (no change there then) and had no idea what was going on.  Me neither, and it disappeared 2 years later as my hormones settled down.  I now know I was having oedema urticaria, ie. an allergic reaction to something in the weather (you can be allergic to water, heat or cold which even I find bizarre!) and histamine was causing my lips to swell.  It was another early indication that I had mast cells which needed to be reined in.

All my life, from the moment I was born, my skin has flushed bright red, but only when I was hot, emotional (ie. angry, excited, stressed), over-tired (usually from mental Photo of mast cell stomachj flushing

Photo of mast cell flushing

over-concentration rather than physical over-exertion) or drank alcohol.  The flushing starts as a blotchy red patch on my chest, spreads up my neck, and over my cheeks, leaving a white ring around my eyes which looks like I’ve been in a tanning booth wearing goggles.  Sexy!  When I’ve had a bath I also have the blotchy rash on my stomach, as well as my chest, neck and face, but no-where else.  It’s just part of who I am, though it embarrassed the hell out of me as a teenager when I would go out with friends looking like a lobster.   Even now I do still get upset by the stares and remarks about my flaming red cheeks – like I can do anything about it!  Funnily enough, I don’t get the blotchy rash when out in the sun which is odd considering the sun makes you hot.

Photo of mast cell induced flushing

Another pointer towards mast cells behaving badly is my reaction to insect bites.  While walking my dog in woodland last year I was bitten by what turned out to be a mosquito (luckily they are harmless here in the UK and don’t carry disease).  The photo on the left is Photo of a mast cell insect bite reaction  Photo of insect bite

how the bite looked for a good 3 weeks and it took a further 6 months for the bite site to stop itching.  And this year I was bitten by some unseen, but evil, little critter and ended up in A&E with my leg so swollen it was painful to walk on, and inflammation which tracked up a nerve to my thigh.  I’m fairly sure reacting in such an exaggerated way to tiddly little insects isn’t normal – imagine what would happen if I were ever stung by a wasp, or bitten by something really potent like a snake!

All of these issues have been my normality since I was a baby and have never raised any red flags.  It was only after developing M.E. in my mid twenties, and consequently began having strange reactions to medications, that I started to wonder if something might be going seriously awry in my body.

I had my first drug reaction when I was 16 following surgery for Congenital Spinal Stenosis (part of Ehlers-Danlos Syndrome, though of course we didn’t know that at the time).  For 3 days after the surgery I had awful muscle spasms particularly over the site of my wound which was incredibly painful, and I had to be injected with a muscle relaxant.  The nursing staff were quite nasty with me, saying I was “getting worked up” and needed to simply relax.  I later found out that muscle spasms are a known reaction to some types of general anaesthesia and are of course a common symptom of mast cell activation.

When I was 17 I picked up a severe tummy bug, and was given an injection of the anti-emetic Stemetil, the active ingredient of which is prochlorperazine.  Dystonic allergic reactions, whereby the muscles jerk and move uncontrollably, are a well known side-effect of phenothiazines and I had my first truly allergic reaction in the form of an Oculogyric Crisis.

Apart from phenothiazines I could tolerate any number of medications, and regularly took travel sickness tablets, common pain killers and the contraceptive pill.  In 1995, however, I had a bizarre reaction to alcohol and this eventually lead on to me having an anaphylaxis-like reaction to just about every drug I put in my mouth (more on this in my Drug Reactions blog post), many of which like Paracetomol (known as Tylenol in the States) I’ve taken my whole life without incident.  Suffering from a chronic pain disorder and not being able to take pain killers of any description has been particularly trying and there are days I’d give my left arm for some Co-dydramol!

I’ve discussed these drug reactions with various doctors and consultants over the years (although none have ever actually witnessed one because I’m always at home when I try a new prescription not in hospital under medical supervision), and the consensus has been that it is impossible to react in the same way to all these varying classes of drugs.  Ergo, it is behavioural, my own fault entirely due to mental weakness and I’m simply having a panic attack – not quite sure how you can diagnose this without even witnessing a reaction, doing a mental health assessment or any relevant blood tests, but there you go.  There have been times I’ve cried tears over this, and other times I’ve wanted to batter the doctor with a hammer in anger and frustration.  I knew they were wrong, but didn’t know how to prove it.

In 2004 I started to cough.  This was no ordinary cough, but a chronic, dry, unproductive, irritated cough which went on, and on, and on and……..well, on.  My record is 5 months and I coughed so much I honestly thought I would die from oxygen deprivation.  Chest X-rays were normal.  No signs of viral infection.  My peak-flow was superb, I wasn’t wheezy or gasping for breath, so asthma was ruled out.  No-one had a clue what the cough was all about and I just continued to suffer with chest tightness, air hunger, coughing and the feeling that an elephant had taken up residence on my breastbone.  This is one of the few symptoms that has really gotten me down and, to be honest, at times scared the absolute crap out of me.

Photo of hivesIn 2007 I developed hives on my behind.  It would start with an itch and a tiny raised, red blister.  These would spread over the course of a few days, until they were larger, had raised red edges and white-ish centres, and sometimes spread into each other to form larger, itchier, spots.  They’ve been coming and going for absolutely no reason ever since, but are always thankfully confined to my butt for no reason I can fathom.  They last for weeks, sometimes months, and the only thing which gets rid of them is steroid cream.

In March 2011 I went through a particularly terrifying phase of my illness.  I started having a mild version of my drug reactions after eating.  About 20-30 minutes after food I would feel faint, have tachycardia, my blood pressure would plummet, I’d feel quite anxious, extremely nauseous, have muscle weakness which meant I had to lie down, and an awful pain in my head like my brain was being squeezed in a vice.  These symptoms resolved after about an hour, but were extremely scary and I had no idea what was causing them or what to do.  By the time each set of symptoms had subsided, and I was virtually back to normal, it was time for my next meal and the whole thing would start all over again.  My biggest fear was that the reaction would get so bad that I’d literally be unable to eat and, unlike drugs which you can stop taking, food is a fairly vital component to life!

My GP referred me to my local hospital Gastroenterologist, who arranged for an endoscopy and a belly MRI scan (he actually wanted a CT Scan using contrast dye but, knowing my drug reactions and after discussing it with the scanner operator, it was deemed too risky).  The MRI scan came back perfectly fine, which surprised the hell out of me as I’d had lower right abdominal pain for years and I was convinced at least something would show up on the scan to explain it.  The endoscopy showed I had several stomach polyps, which were biopsied and found to be benign and therefore not the cause of my eating problems.  I was also tested for ulcers, H.Pylori and Coeliac Disease, all of which came back negative.  The conclusion was chronic gastritis, probably due to poor gut motility as part of my HEDS, and I was prescribed H2 blockers which initially helped until my mast cells decided to reject them and I became allergic.  I was also diagnosed with GERD (Gastro-oesophageal Reflux Disorder, or heartburn to you and me), despite having  no symptoms of heartburn to my knowledge.  To treat this I did risk taking some liquid Gaviscon Advance which again I initially tolerated well but after about a year of use became allergic to. Treating the GERD initially had 2 major benefits: firstly the “muscle pain” between my shoulder blades, that I’d had for donkeys years, virtually disappeared.  I now think the acid was burning the back of my oesophagus (and therefore causing back pain), rather than the front (causing pain between the breastbone) which is more usual.  The second very welcome benefit was that my cough disappeared.  The conclusion can only be that I was inhaling acid from my stomach into my lungs, which caused chronic inflammation in my airways, at times bordering on walking pneumonia.  The only medication I can now tolerate for my reflux are Rennies, of which I take 6 each day.  However they’re not strong enought to treat my severe and chronic GERD, my cough has returned and I continue to have both upper back, stomach and oesophageal pain.

Thankfully, it was around this time that I joined some EDS forums online and saw several posts about Mast Cell Activation Disorder, which appears to be more common amongst the EDS population due to the fact that mast cells live in connective tissue, the connective tissue in EDS is faulty and this seems to make the mast cells also faulty.  Mast cell activation explained the GERD, drug reactions, hives, dermographism, flushing, reactions to insect bites and my puberty-related trout pout and the relief at finally discovering the cause of my many and varied issues was huge.  I asked my GP for a referral to an Immunologist, but my appointment in June was disappointing and didn’t go anywhere near to explaining my symptoms (it’s very common to come across uninformed consultants who give a diagnosis for each individual symptom but don’t join up the dots and arrive at a mast cell conclusion).  So I paid privately to see a mast cell disease specialist in London (see the blog post on my initial appointment here) and in December 2013 was diagnosed with both Histamine Intolerance (which explained my allergic-like reactions after eating) and “probable” Mast Cell Activation Disorder (unfortunately the tests required to confirm MCAD aren’t available here in the UK like they are over the pond in the States).

However, I could only afford to see the private Consultant for an initial diagnosis and for the past 3 years I’ve been left to manage the condition myself.  My GP is nice but knows nothing about MCAD and there are no specialists here in the North of England.  The great thing about having a confirmed diagnosis though is that local Doctors do now take my reactions seriously which, after 15 years of being treated like I was mental or exaggerating, is a massive relief and worth the nearly £1000 the diagnosis cost me!

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42 thoughts on “My Mast Cell Journey

  1. Dawn

    I have to say, THANK YOU so much for your willingness to write this blog. I found my way here because of the EDS, however reading this and seeing the pics you posted… yep… light bulbs everywhere! I never even KNEW about this! I wouldn’t have connected it were it not for the photos because I thought that was just normal for me. I am going to ask about this at my geneticist appointment on Friday. I hope you know that you are helping many people by doing this blog and I look forward to more of your posts. Thank you!

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    1. bertieandme Post author

      Hi Dawn

      I’m so pleased you’ve found the blog helpful 🙂 Like you I’ve had these issues since early childhood and they were just normal for me, so I had no idea there was a problem either! My Mum also has MCAD symptoms, so in our family sneezing, flushing, itching, reflux etc. was the norm!! Good luck with getting some answers – it’s not easy to be diagnosed as there are so few doctors yet who know much about mast cell disease.

      Jak x

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  2. Julie Fenn

    My mum used to stay, we are not like other families. I used to wonder what she meant because being in it was, well …. normal. It was only when I started to compare myself and them to other people I began to see it, or rather, they pointed it out to me. Having had ME 20 years I keep going back to alll those clues in my early life. The flushing is really bad, in fact I should audition for a part in the next X Men film. Sister and her daughter get it too but I have never seen it on anyone else until these pictures of Jak. Also mast cell activation has just been discovered in Fibromyalgia which I have as well, not sure but think it was Harides. I was going round like crazy thinking who can I tell but no one seemed interested. HI five guys.
    Julie

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    1. bertieandme Post author

      Hi Julie

      When you find other people with the same issues as you it’s such a relief isn’t it?! When I came across MCAD it was lightbulb central and I knew without a doubt I had it. My ME specialist had diagnosed me with Fibromyalgia, but since doing my low histamine diet my pain has improved substantially. I don’t think I ever had FM, I think it was mast cell disease which can cause awful burning skin, bone pain, muscle pain and nerve pain. I’ve had back pain for 30 years and since going low histamine it’s reduced by about 60% (will never go totally due to EDS but at least it no longer keeps me awake at night!).

      I’ve flushed since I was a very small child, but again on the low histamine diet it’s reduced by about 80%!! I’m so used to having a blotchy red chest and cheeks it now feels totally peculiar to just be sickly pale all the time LOL!

      Good luck with getting to the bottom of your problems and I’m glad the blog has helped in a small way.

      Jak x

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      1. luciduniverse

        Burning… the burning skin…
        Two years ago, I cleaned house for three days in a row for Spring Cleaning. My hands were burning but I had gloves on. I did not use a lot of chemicals due to sensitivities. On the fourth morning, I woke up with my hands and feet burning so badly, I could not use them. I could not walk on my feet without severe pain for several days. I iced my feet and hands and made an appointment to see my Neurologist…who had diagnosed me with Fibromyalgia with Small Fiber Neuropathy and an Autoimmune Disorder of unknown causes. On the appointment day, he told me that cleaning the house kicked up the dust, caused allergic reactions which caused my neuropathy to flare. Never knowing what Autoimmune disorder has been a puzzle to me. I have been able to tolerate less and less foods and have been eating Ela Care and baby food formulas (except ones with soy) with Oatmeal. I can eat Ice Cream… certain brands.
        I have had Burning skin since I was young whenever I had any skin product from lotions to make-up and soaps. I had Burning from Pollens in and then Burning Eyes and now the Hands and Feet now Burn from 1-10 on average scale of 0-10. I mean, I have Burning most of the time but fluctuates from a White Noise Burning to a Burning sensation as-if I had burnt my hands in boiling water. I did that as a kid so I do know how that feels. The Burning goes to White Noise when the Nausea kicks in though. The Nausea and Dizziness is the worst.

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        1. bertieandme Post author

          I still have the burning skin too, all the time (worst affected areas are my thighs and forearms). Mine gets worse when I’ve been exercising (ie. just walking normally) and in the evenings after I’ve been up and around all day or typing on my laptop. I have no clue what causes it – I don’t think mine is mast cell related, and have a hunch it’s more to do with my Ehlers-Danlos or ME because it’s related to fatigue/activity for me. We’re all so different though and it sounds like your burning skin is much more extensive than mine. Hopefully a proper diagnosis will help you find some solutions x

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  3. Julie Fenn

    Gosh thanks jak. Really helped. I was away on cruiseships too when these problems, kicked off full on. Have been on a striking similar journey, same age now ish, but then thats not unusual. I agree with what you said about fibromyalgia.

    I have burning thighs at about 3am which sounds hilarious and like I should be confessing it on one of those sleazy sex channels, but actually needs addressing, and my ME buddy even thinks I’m mad. I put it down to skin inflammation like that on my chest, so histamine makes sense if thats possible.

    Anyway I have come across a Dr P Ho in Manchester. I live in Warrington so I am thinking of asking my gp to refer me to look at poss eds as Im bit bendy but not round the bendy, as has been suggested in the past. The mast cell thing (only heard about just prior to your article in 25% group )seems really spot on for me, but I think thats step 2. Would you say this is the best way to approach?

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    1. bertieandme Post author

      It was Dr Ho who diagnosed my EDS, though I chose to pay privately as her NHS waiting list at the time was 14 months!! Going private cost £200 but I saw her 9 days after requesting an apt, so worth thinking about if you have the cash. After diagnosis she put me straight into her NHS clinic, so I jumped the waiting list (sneaky I know!). She has a dedicated hypermobility team, which include physio and occupational therapy, so yes I’d say a good place to start. Make sure you tell her all your symptoms (write them down as you won’t remember at the time), eg. any stomach/GI problems, pain, fatigue, any problems with bruising easily or skin tearing easily etc.). She initially diagnosed me with Joint Hypermobility Syndrome because at the time I didn’t have many stomach issues and had never dislocated any joints (oh, how things have changed!), but the top EDS consultants now think JHS and EDS are the same disease anyway.

      Jak x

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  4. Karen Neill

    I’m so thankful reading this blog- so, so many similarities. Just a few things I really noticed.
    Do those red dots on your bottom blanch when you press them, or not? Because if not, they may well be a sign of a mast cell rash (how yours develop sound very much like mine, but in me I they’re spreading everywhere.)
    The other thing us that I recently read that there us new information linking antacid use to an increase in food allergies, I’ve been on Tecta (pantoprazole) for several years to protect my stomach from naproxen, an anti-inflammatory I take for my ideopathic inflammatory arthritis. I’ve just learned that a recent study from ?Sweden? (Can’t remember for sure), causally linked increased ant-acid use with increased food allergies. The logic follows if you are aware of the recent increase in understanding of the gut barrier function- if there isn’t enough acid to break down proteins then if you are prone (I.e. Have a more permeable gut), and the longer proteins get thru, your immune system is very likely to see it as foreign.

    Oh- and the cough. Shame on your doctors for not picking up the GERD link. One of THE most common causes of a persistent cough. In fact, after all the expected stuff (cold,mast ham, smoking, infection,meta.), the top reason. It’s also one of the top reasons for voice disorders. (I’m trained as a Speech and Language therapist, so I do have some professional knowledge here). They should have picked that up!

    I’m only just beginning my Mast Cell journey, it sounds like it is never a simple, straight road with great maps. Google maps could use a bit more work on there navigation on this one!

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    1. bertieandme Post author

      Hi Karen

      Thanks for taking the time to comment, though I’m sorry to hear you’re also having to go through all this.

      I’ve read several negative things about the use of acid suppressants, but personally I’m not convinced. The reason people with MCAD take acid suppressants is that they’re *over* producing acid. So logically something like an H2 blocker (which reduces stomach acid by approx. 50%) only brings the acid down to a normal level, which by its definition is adequate for normal digestion. Proton Pump Inhibitors bring down acid by 80% so I can see why maybe they’d make the acid levels too low, but again you’re only on them if you’re having issues with very high acid. I’ve only been taking Tagamet for about 6 months, yet have had food reactions for 2 years so for me there doesn’t seem to be a connection.

      The leaky gut syndrome, however, I’m fully on board with. But IMHO this is more likely to do with the gut becoming permeable through mast cell activation (which widens blood vessels in the gut lining making the gut more leaky). The reason most people are on acid suppressants is that they’re producing too much acid and it’s the stomach mast cells which produce the acid. So the acid suppressing drugs get the blame for making the gut leaky, when it’s actually the mast cell mediators themselves. Though of course I’m no expert and could have all this totally wrong!

      I agree the mast cell journey is a complicated one and I wish you luck in getting your diagnosis and hopefully some treatments which help.

      Jak x

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      1. luciduniverse

        I have some questions that my doctors of course do not want to address. My father had severe asthma throughout his lifetime. He died at age 62, in 2010. He died from a hiatal hernia which would not repair or heal after a hiatal hernia surgery a few months prior to his stomach overflowing and causing him to choke on blood and stomach acids in his bedroom while another family member was not home. I thought there was some kind of connection that was genetic because my allergies and asthma and GERD were becoming severe around the same time my father was having his medical issues hit the bottom. I am not asking for an answer. It has been a personal quest to find that. But… it seems to me that there is some link to genetics. My mother was diagnosed with Lupus in the 90s. She has had an awefully large area of rash on her inner thighs and has spent a lot of money on private dermatologists over the years. I just am bringing this subject up to her. Yet, it does seem that a woman in her 60s who does not excercise but can sit Indian style might be more flexible than average. I have to ask her if her if thumb can backwards too–very interesting blog.

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  5. Ruth Heasman

    Hi Julie, I am loving this blog! Thank you! I just wanted to mention that the bite mark behind your ear is a classic erythema migrans rash or Lyme rash. Look it up on google images and you’ll see what I mean. Mosquitoes do carry the Lyme bacteria so you can catch it from mosquitoes, even here in the UK. Lyme has symptoms that crossover with MCAD, POTS and ME. I have rheumatoid arthritis, Lyme and ED and MCAD myself. Antibiotics help reduce symptoms of all these conditions for me.

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    1. bertieandme Post author

      That’s alright, I’ve been called worse lol!

      I had the same worries re Lyme myself with the rash, so did get tested at the time (luckily we have a specialist Lyme testing centre where I live as Lyme is endemic in the Lake District). All was negative thankfully x

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  6. Ruth Heasman

    Hi Jak, I’m glad this thought occurred to you and our doctor, it so often gets missed. Did you get tested by Igenex labs by the way? Because if not, the chances of getting a positive are slim to none. The Porton Down tests you get from your GP are about as accurate as tossing a coin. I think I caught mine when I lived in a tick infested forest in America, but was asymptomatic until I caught another dose on a camping holiday in the South of France. After that I went downhill fast with rheumatoid arthritis. I’ve had a few bullseye rashes (and some attached ticks) since then. I don’t know whether having been exposed to the bacteria makes you more likely to have bullseye rashes, or, as you say, it’s a function of histamine intolerance? But either way, the antibiotics get my arthritis into remission in a way that standard arthritis treatments don’t, so that’s evidence enough for me.

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  7. Ruth Heasman

    By the way, have you noticed any link between your menstrual cycle and MCAD and other symptoms? My allergic trigger is estrogen, and so I basically don’t have MCAD and can eat anything I like on low estrogen days, but on high estrogen days (around ovulation and period) everything sets me off. I supplement progesterone, as my body doesn’t make enough of it, which has the surprising effect of making my cycles more regular than they have ever been, as well as reducing PMS symptoms. My dystautonomic episodes include sudden weakness, fatigue, too hot or too cold, blood sugar drops, nausea, involuntary twitching and muscle spasms, dizziness, hyperventilation and sometimes a feeling of pressure in my head and neck, like too much fluid suddenly. I’d consider an hysterectomy, but my doctor says no. Are your symptoms worse at high estrogen points of your cycle? For me, this is my primary trigger, (that and bacterial endotoxin).

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    1. bertieandme Post author

      Menstruation is a known mast cell trigger, so yes I suffer quite badly every month (roll on the full menopause!). The uterus is full of mast cells which contain oestrogen receptors, and they readily degranulate during menstruation. From all the reading I’ve done online the majority of women are diagnosed with a mast cell problem in their forties, as hormones start to go haywire as we enter peri-menopause. I didn’t have any food or stomach issues until I was 44 (although I’d had other symptoms for years).

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      1. luciduniverse

        I thought I was bypassing the Menopause issues. But hitting forty is when the food intolerances and allergies kicked in from rare to rarely-not.

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      1. performanceticketprinters

        Hi Donna, I use progest e. It is progesterone dissolved in vitamin e oil and was developed by a physiologist called Dr Ray Peat – though he doesn’t make or sell it. It is a strong formulation and you take it orally, by dripping 2-3 drops into your mouth. If you look up the symptoms of estrogen dominance, they overlap strongly with MCAD and POTS. Some hypermobile EDSers have problems with progesterone making their joints more lax. I have rheumatoid arthritis so I don’t have that problem, but that’s something to be aware of. The best thing to reduce propensity to allergic type responses would be to reduce estrogen levels, which is hard to do, short of having a hysterectomy. One way is to be the right weight, which I am not currently, as fat cells make estrogen. Another way is to make sure your thyroid is working properly, and to feed your liver to help it detoxify estrogen effectively. Feeding your liver consists of eating plenty of carbs, and getting enough selenium and b vitamins in your diet.

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        1. Donna Woodward Taylor

          Thank you Ruth. I was using Progest sachets and they made me feel a lot better but I stopped using them when I read that progesterone makes your joints more lax. I have a job keeping all my joints where they belong as it is. I wonder whether the hormones in Implanon were exacerbating my symptoms, I had it taken out in January x

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  8. Ruth Heasman

    Ooh, great reply, thank you! I didn’t know that! For me the problem is at ovulation as well as around my period, basically whenever my estrogen levels are higher than my progesterone levels I have trouble, which can feel like every other day at times.

    I read somewhere (can’t find it right now) that progesterone upregulates DAO enzyme levels (which break down histamine), so for me supplementing progesterone is equivalent to supplementing DAO.

    Here’s an interesting snippet “Histamine has been shown to stimulate, in a dose-dependent manner, the synthesis of estradiol via H1R; meanwhile, only a moderate effect on progesterone synthesis was observed (117). The painful uterine contractions of primary dysmenorrhea are mainly caused by an increased mucosal production of prostaglandine F2α stimulated by estradiol and attenuated by progesterone. Thus, histamine may augment dysmenorrhea by increasing estrogen concentrations. And, in reverse, estrogen can influence histamine action. A significant increase in weal and flare size in response to histamine has been observed to correspond to ovulation and peak estrogen concentrations (118). In pregnancy, DAO is produced at very high concentrations by the placenta (119, 120), and its concentration may become 500 times that when the woman is not pregnant (120). This increased DAO production in pregnant women may be the reason why, in women with food intolerance, remissions frequently occur during pregnancy (14).” http://ajcn.nutrition.org/content/85/5/1185.long

    I was pretty much in remission from my rheumatoid arthritis during pregnancy, as are most women with autoimmune diseases. This is probably part of the reason why.

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  9. Adrienne

    I am so glad for this website! I have 2 kids ages 21 and 15 who were told by a geneticist abotu 5 years ago that they have EDS. Then a year later my 21 year old was diagnosed with POTS by a cardiologit after having had a major hemiplegic migraine. This poor guy has complained of pain since he was 2. My 15 year old started showing a curved spine at the age of 2 and she started wearing a brace at age 7 and is still braced 16 hours a day for scoliosis. Golder Wilson, Genome doctor saw the kids 5 years ago and said he did not even need to test them for EDS, they DEFINITELY have it. I am now ready to have it officially tested and am quite sure I HAVE it. He told me I probabaly do because I have “fibromyalgia”. The past few years I have gotten worse and worse with my pain adn fatigue and bad reactions go bug bites and rashes constantaly. I have recently stumbled in the whole Mast Cell Disorder issue when I read that maybe I have a histamine intolerance. This led me to all these other connections and now your site is putting all the puzzle pieces together for me. Three weeks ago I had bug bits that looked like yours in these photos. Now I have other rashes and rash after rash for the last 4 months is driving my bonkers. I am afraid to go outside, lest I get a bug bite! I wake up at 3 am everynight itching! I have been on “health foods” and alternative meds for 20+ years! Reading your various posts, is like reading my LIFE! Your FIRST post describing yourself growing up is like DITTO ME. I was always haning upside down, craving salt, and in ballet and love dancing. My 15 years old is a hyper mobile dancer and she and I BOTH have the feet you have with high arch and the collapsing issue. My son craves salt like there is no tomorrow. Doctor said to let him have all he wants.

    Currently, we are in the Dallas area. I would love help finding an expert on Mast Cell testing. Any suggestions? i found somoen in McKinney, TX who specializes in Disautonomia. Not sure if he would test for Mast Cell.
    http://www.dinet.org/index.php/index.php?option=com_physicianlist&view=physiciandetail&Itemid=0000&phyid=390

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    1. bertieandme Post author

      Hi Adrienne

      I’m so sorry to hear how badly affected your kids are with EDS – must be hard for them 😦

      I’m in the UK so I’m a bit clueless on who to see in the States I’m afraid. It’s really important to see someone who knows about MCAD – not all consultants even believe it exists or know anything about it. Someone mentioned Dr. Rebecca Gruchalla at UT Southwestern http://profiles.utsouthwestern.edu/profile/12819/rebecca-gruchalla.html on a Mast Cell Forum and she does list Mastocytosis as one of her special interests, but that’s not to say she recognises MCAD – you’d have to check.

      You could also ask on the EDS Inspire Forum at http://www.inspire.com/groups/ehlers-danlos-national-foundation/ or on the Inspire Rare Disease forum which discusses MCAD http://www.inspire.com/groups/rare-disease-and-genetic-conditions/ – both groups are American based so there will be lots of knowledge on there regarding which doctors to see.

      Good luck. Jak x

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  10. Donna Woodward Taylor

    Hi Jak, I had my first obvious mast cell rash but now I am wondering whether that is due to the folic acid I was taking on the advice of the midwife. I am still trying to get my head around the MTHFR enzyme-deficiency thing. I had a really bad eruption a couple of years ago but mine started between my boobs and then spread all over my trunk. The only bits that weren’t affected were my face and hands. Maybe Vitamin D helps? I treated it with UV (sun beds), aloe vera and antibacterial lotions and after a few weeks it started to fade. A lot of my problems seemed to go away when I stopped eating gluten and dairy (due to intolerance) but now I am starting to react to lots of other foods and am starting to feel like everything is falling apart :-/ Do you take digestive enzymes? I am finding them very helpful with the bloating and am finally getting strong nails 🙂 I suspect pancreatic insufficiency contributes to our problems. Slippery Elm seems to calm down the inflammation too. I am so glad that I found your blog. Thank you 🙂

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  11. Donna Woodward Taylor

    PS I only found out I had EDS last week and I too found the “lightbulb” information about mast cell disorders in one of the groups when someone posted a photograph of a rash. I have now been referred to our local allergy clinic where hopefully they will be able to carry out some further testing x

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    1. bertieandme Post author

      Hi Donna

      Thanks for taking the time to comment, though I’m sorry to hear you have similar symptoms to me. Great you’ve finally got your EDS diagnosis – although there’s no cure at least you can hopefully start to manage it properly which does help.

      I don’t take digestive enzymes as I’m so intolerant to meds and supplements they just cause more problems than they solve, but if I *could* I’d try all sorts and I’m glad they’re helping you 🙂

      I hope now you’re finding out what some of your issues are you can find a way of reducing your symptoms.

      Jak x

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    1. bertieandme Post author

      Hiya, thanks for the comment. Although EDS is considered “rare” it’s not at all IMHO, just under-diagnosed and I’m amazed at the amount of people who actually have it! Same for mast cell disease, although getting a diagnosis in the UK is almost impossible 😦

      I think it was Julie, one of the commenters, who’s from Warrington not me – I’m up in the Lake District – but I’ve now had 3 people from Warrington comment on posts so you should all get together! 🙂 Jak x

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  12. Lisa Pittman Bowman

    Glad I found your blog. I too have a terrible time with medicine and avoid it like the plague. When I was 18, I had my wisdom teeth removed and became sick for months. I’ve been told that I probably reacted poorly to the anesthetic. The gum tissue in the back took years to heal and never did heal right.

    Thirty years later, I was told by two different dentists to have the excess gum tissue removed where the wisdom teeth were. I told the oral surgeon what happened when I was 18. I told him that I have EDS. Well having EDS can be a storm of weird symptoms at any given point and after the surgery (injected with lidocaine) I started experiencing really loud tinnitus and muscle twitching. I didn’t put two and two together as I just thought it was something else in me that went awry. I also suffered severe depression and other wonky symptoms. Two weeks later, it’s my follow up appointment and the surgeon looks and says that more tissue needs to be removed and “let’s take care of it since you’re here.” He injected me with more lidocaine and now I know that the symptoms I ended up with are a reaction to the lidocaine only now the symptoms are more severe and include other problems. I feel very abused at times by the medical system. They truly should give out side effect lists because had I known, I would have never gotten injected with that stuff again. It took two weeks (pretty much to the day) before the first symptoms started to improve.

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  13. TC

    Blimey, Jak! This sounds like me you are talking about. So many similar symptoms and the same diagnoses up to the EDS one. I haven’t got one for MCAD although have 90% of the symptoms.

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    1. Jak Post author

      Hi TC

      Sorry to hear you’re part of the Club, but glad you’re finding my blog useful – it’s always nice to know we’re not alone with our weird symptoms! Thanks for taking the time to comment 🙂

      Jak x

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  14. Jess

    I just want to say thanks for this – for 15 years I have had dermatographia and an ever increasing list of food and drug allergies and chronic pain. I finally met with a rheumatologist who diagnosed joint hypermobility, but only as an interesting aside, not as a cause for anything. I also have congenital cervical stenosis and most of my pain has just been written off to that, and then I got a fibromyalgia diagnosis which I never felt was accurate. In researching joint hypermobility, I discovered EDS and how much it matched a lot of my symptoms and then stumbled across MCAS in my research and all the light bulbs went off in my head. I am in the process of being diagnosed now, but I am 100% certain this is my issue. And I was told for years that I was overreacting or it was in my head, told I had somatiform disorder, it was just anxiety, I was a hypochondriac. I told my husband that I am sure no one has ever been happier to be diagnosed with an incurable disease before, but I feel vindicated. I am even realizing the more that I read that I have had these things going on to varying degrees since I was a child – and told to ignore them all. I am at the point now where all I can take for my debilitating pain is tylenol because everything else triggers my dermatographia to get worse and I am afraid of anaphylaxis which I have already had in response to antibiotics. But I am finally hopeful that there might be treatment options in my future or that at least doctors will take me seriously from now on and that is a huge relief. I came across your blog though, and it is really amazing to see someone going through the same things I am when I have been led to believe for years that it wasn’t really an issue. I hope you are having luck getting your symptoms under control and maybe in to see better doctors.

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    1. Jak Post author

      Hi Jess

      It’s such a relief when you come across other people with your strange symptoms isn’t it? When I started having back pain at the age of 11 yet all my xrays came back fine (there were no CT or MRI scans in those days!) and I was told I was attention seeking. Only when CT scans were invented when I was 16 was my spinal stenosis discovered. I’ve been told most of my life that my symptoms were behavioural or psychological, so to discover that *none* of them were was such a huge relief! Hope you get to the root of your symptoms soon.

      Jak x

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  15. Deb

    I was diagnosed with MCAD here in the states by a doctor who specializes in mast cell activation disorders. I am thankful for the answers that are coming together. I have had this they think since birth. Is there a such thing as skyping doctor visits? The doctor here wrote a book about Mast cell activation disorders.

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    1. Jak Post author

      Really pleased you managed to get your MCAD diagnosed Deb, it’s certainly easier in America than it is here in the UK. The problem here is that our Labs don’t test for mast cell mediators, so even if a Consultant is willing to see you they can’t do the required blood and urine tests. It’s a huge problem and because MCAD is still not a ‘formal’ disease and classified by the WHO our NHS still doesn’t really recognize it. I paid privately to see my MCAD specialist 300 miles away, but I can’t afford to see him for ongoing treatment. Many can’t afford to see a private specialist at all 😦 None of our doctors do Skype or even telephone appointments – the system here in England is very different to the USA. Jak x

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