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How to understand the difference between Histamine Intolerance and MCAS?

Discussion in 'Mast Cell Disorders/Mastocytosis' started by mermaid, Oct 21, 2016.

  1. mermaid

    mermaid Senior Member

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    I am not sure how I missed this one, having been ill with ME/CFS for over 10 years, and I know there has been a board on here, but somehow I didn't think it applied to me! Anyway, the penny finally dropped earlier this week when I was reviewing my chronic stomach pain that the 'experts' like to call Non Ulcer Dyspepsia which has been going on for years. Before all that I had gastritis some 14 years ago, and before all that going back to when I was 20ish (I am now 64), I had diarrhoea predominant IBS for some years. Maybe all connected I now think......

    Having had no help from the NHS other than the offer of medications I didn't want to take for fear of worse side effects, I decided to just alter my diet some 5 or 6 years ago, and cut anything out that triggered the awful pain, that would come on, and increased in intensity and length over the years - would go on for days before calming down. The penny dropped this week, after a calm time, when I realised that chocolate which triggered a really bad stomach pain spell, is high in histamine. A private Dr had offered me a histamine test some 4 years ago, but I was running out of money, and it was expensive, so I turned it down (by then I had spent hundreds with him on various other tests).

    So, now I look at my other symptoms and can see the connections to the histamine issue - maybe the whole ME/CFS diagnosis......sore throats for years not resolving, nasal soreness, both of which I thought were viruses (Oil of Oregano helps but now I see it is an antihistamine!), migraine aura that has worsened in frequency, fatigue of course, and the awful stomach pain that has floored me at times, and this year worsening allergic rhinitis, especially following some eye drops I needed following an eye operation. Never all the symptoms at the same time, but moving around.

    So, I hope it is Histamine Intolerance which I can control better and I am already on that case with my diet now better understood - nearly all the foods I had chosen were low histamine, but I can fine tune it now I know more. But how would one know if you have MCAS? If I had ignored the worsening signs of the symptoms I have, would it turn into MCAS? Or do I have it already in a mild form?

    I plan to work my way through this thread now I understand a bit more about the histamine issue and see what I can see here too of course!
     
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  2. mermaid

    mermaid Senior Member

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    Replying to my own post as no one else has .......the short version this time. Longer version above.

    I seem to have a histamine issue (maybe MCAS too though perhaps not very severely compared to some), and already going low histamine has cured my stomach pains, and maybe the migraines (only time will tell on that one).

    I still get fatigue and lack of stamina but as my endo has me on reduced T3 for now, that may be the reason for that!

    Can't quite believe I have been ill for so long and the answer to some of it was within arm's reach and no one (ie mainstream medicine) had a clue of how to help. I have been ill with stomach issues for most of my adult life (am 64 years).
     
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  3. ryan31337

    ryan31337 Senior Member

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    Hi @mermaid,

    You may as well have posted under my name. Exactly the same experience here with years of fluctuating rhinitis/congestion, migraines, stomach pain/disturbance and food intolerances. Also random bouts of itching, hives & stubborn dermatitis. The last year has seen spells of resting tachycardia, breathlessness and hypertensive crisis too alongside worsening health.

    It also drove me mad that I could get things like the stomach pain under control with restrictive diets (low fodmap especially) yet random 'OK' foods like smoked meat or chocolate would sometimes absolutely destroy me. Equally, being on my feet and exerting a lot would set my stomach off without having had any problematic foods. For 20 years it was just explained away by my 'ME', then I learnt about POTS and many symptoms have been apportioned to that. Now MCAS. Next on the list will be methylation defects I suspect :wide-eyed: Live and learn.

    I'm afraid I don't know enough about MCAS to comment any more, only to say there's a strong suspicion and I'm awaiting referral to an expert. Have you been able to obtain professional help?

    Ryan
     
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  4. GreyOwl

    GreyOwl Dx: strong belief system, avoidance, hypervigilant

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    Hi @mermaid, I don't know the difference either. I think that histamine intolerance is being sensitive to "normal" (I hate that word) levels of histamine and having an exaggerated "normal" reaction to it, in terms of the symptoms. So I think that in histamine intolerance the mast cells in your stomach are sensitive to the histamine (and maybe a co-factor?) in chocolate and react strongly.

    I think MCAS is that mast cells are always "leaking" histamine, and so small amounts of general histamine (from food, insect bites, waking up, etc). can push a person's histamine level into anaphylaxis, which is measurable by serum tryptase and other histamine-related tests.

    I don't really understand enough to know whether they are related. Either way, does a H2R antagonist help when you have symptoms?
     
  5. kangaSue

    kangaSue Senior Member

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    Several studies have noted an increased number of mast cells in the mucosa of patients with gastrointestinal diseases such as irritable bowel syndrome but look into a Diamine Oxidase Enzymes (DAO) deficiency as it can be the problem for some people

    DAO production function can be affected when GI function is impaired and when DAO enzyme activity is low it leads to an alteration in the metabolism of food histamine.

    Don't bother with getting tested for your DAO enzyme level in the blood as it fluctuates greatly over the course of a day and is not a reliable indicator of deficiency.

    Try adding in a DAO supplement such as DAOsin or one of the similar things (if you're o.k. with pork products).

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033552/ (Mast cells in GI disease).
     
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  6. mermaid

    mermaid Senior Member

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    Thank you @ryan31337 @GreyOwl @kangaSue I apologise but I still cannot get my head around how to do multiple quotes despite someone trying to explain it to me.

    I have read up a little bit more now and my understanding is that the mast cells produce more than just histamine, so although histamine is probably the factor that affects us the most, that the other factors can be problematic also. Do correct me if I have that wrong though!

    In my case, I suspect that histamine is the worst, but it's interesting that although my primary problem is my chronic stomach pain (along with migraines also), if I eat turmeric I do not get stomach pain, but instead get burning 'down below' (as my mother used to call that area, ha ha!). I have looked up turmeric and it's both good and bad, as it apparently curcumin inhibits mast cell activity, but also turmeric is a DAO inhibitor.

    So, yes, as @kangaSue has mentioned I do need to get hold of a DAO supplement, if not to use it all the time (expensive) to at least have with me if I eat out or am going through a bad spell. I believe that an H2R antagonist that @GreyOwl mentioned (an antihistamine medication?) could also be useful for occasional use (not good to use all the time as apparently histamine then is blocked but not reduced), but I wonder if it might help for medical procedures as I am finding that I react to some medications. I recently had an eye op and the eye drops definitely affected me re rhinitis for some weeks.

    I am sorry to hear of your troubles @ryan31337 as they sound worse than mine although mine are of long duration. I don't seem to get a lot in the way of skin issues, except when I have an insect bite, and then I can get an exaggerated reaction (many years ago my arm swelled up) but not anaphylaxis thankfully. I see that you are in the UK also. I am interested to hear that you are now being referred to someone - may I ask where that is and what kind of consultant will you see? I am due to see my GP in a few weeks and want to discuss things, but I feel that I can probably control mine fairly well myself now I know the score, but I want her to be aware at least and put things in my notes. I suspect that going to see someone from the far west of Cornwall is going to be a very long trip.
     
  7. justy

    justy Donate Advocate Demonstrate

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    The short answer to your question is that it is not really possible to know the difference easily in yourself. It could be histamine intolerance, or lack of DAO, or MCAS. MCAS has a habit of 'stepping up' in severity when triggered, in much the same way ME can.

    There are no NHS specialists for this in the UK and no GP is going to know anything about it.

    There are two or three private specialists who may be able to help, PM me if you want a list. MCAS is a clinical dx - Tryptase could be high as can methylhisatime in the 24hr urine test - but these could also be normal and still have MCAS. also they have to be collected and handled very specifically and there are no NHS labs that will do this properly. Testing is also best done during a reaction. Not all people with MCAS have anaphylaxis. and yes Mastc ells release a whole host of chemicals and messengers, not just histamine, that can mess us up!

    The treatment is pretty much the same and to a certain extent can be trialled at home -

    Low H diet
    H1 blockers
    H2 blockers
    Daoisin
    Neuroprotek
    stress reduction and meditation

    for MCAS, if these don't help enough then can add prescrinbed meds such as ketotifen cromolyn etc. You might be a good candidate for cromolyn as it works on reactions in the GI - my GP wont prescribe it for me, but your might.

    Good luck - and also realise that if its MCAS, rather than Histamine intolerance, then there are so many symptoms that you wouldn't necessarily attribute to MCAS that it can cuase - for me neuro symptoms as well as all the rest,
     
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  8. ryan31337

    ryan31337 Senior Member

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    That's a really helpful overview, thanks @justy. Are you familiar with the Urticaria clinic at St Thomas' in London? I've been referred there. Its also a mastocytosis centre and the doctor I'm due to see appears to at least acknowledge MCAS.

    @mermaid, I wonder do you have any comorbidities associated with MCAS? POTS & EDS are big ones that I know of. This would add some weight to your case I'd hope. I'll drop you a PM with the doctors I have found to be very helpful, all in London area I'm afraid.
     
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  9. mermaid

    mermaid Senior Member

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    Thank you so much @justy for taking the time to write all that out. It's most helpful to know what is possible in the UK.

    I have had issues going right back to when I was around 19 (actually I vomited a lot as a child so probably before), as I had constant diarrhoea and took medication for around 4 years for it. I think the histamine issues have intensified over the past 15 years though.

    Although GPs and specialists may say they know nothing, of course they do really, because even they know about the role of histamine in insect bites, and hay fever, and must therefore know something about mast cells. Also the foods that traditionally people were told to avoid re migraine (cheese, chocolate, red wine) are all high in histamine.

    I am beginning to get my head round the diet, but can see I trip up easily and will need to try things like Daoisin, and the H1 and H2 blockers as when I go out it's more difficult. Thank you so much Justy for that list - I will work my way through, and am also reading what I can on the net, and have got 2 books to read on the subject now. Thank you also for the offer of the known private specialists.

    I will message you as I would like to tuck that away for now and see how I go on my own first. I think I may be comparatively lucky that my symptoms are long lasting but milder perhaps. I have had low BP for a long time, but I see that the systolic is getting more normal (though not the diastolic). Also it's all not being helped currently as I am trialling reducing my T3 on the endo's request at the same time as trialling a low histamine diet - so it's hard to know what's what here! (e.g. more fatigue).

    @ryan31337 that is interesting re your referral. I hope that works out - please do feed back on here!
    Re the POTS and EDS - while I don't believe I have EDS, I do have hypermobility so maybe am at the milder end. As for POTS well yes, again I do have milder issues with this too, but this year have show signs of improving on that also. I used to hate standing for any length of time, but beginning to feel it's not as bad as it was. So hard to be sure about any of it, but my stamina this summer has been quite good. I do go downhill during the afternoon still and now I am reducing my thyroid meds (a trial for the endo) I am taking BP/Pulse/temp over the day to see what happens with that.
     
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  10. ryan31337

    ryan31337 Senior Member

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    Interesting. I had/have a problem with vomiting, mine was associated with severe migraine as a child. As an adult its happened with excessive alcohol consumption or food poisoning. Once it starts i'll go for hours or even days, vomiting at set time intervals like clock-work. Another thing to chalk up to MCAS and/or ANS dysfunction?
     
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  11. mermaid

    mermaid Senior Member

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    @ryan31337 I guess it's possible that you thought you had food poisoning, but it was a histamine overload. Similar with the alcohol as too much histamine. I have not drink alcohol for years, but when I did, I could be affected very badly by some wine - at one time I nearly passed out at an aunt's house due to the awful effect on my stomach. I had only drunk one glass of it.

    I did not get the migraine that you did as a child, only the vomiting, and my brother also. The Dr put it down to something else entirely but this was the 1950s so they did not have any testing for it (called it acidosis actually).
     
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  12. kangaSue

    kangaSue Senior Member

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    It's interesting that you say you get relief from eating tumeric as that has vasodilating properties and it's only vasodilating meds that has ever helped with my type of severe abdominal pain.

    I don't have ME/CFS but have chronic GI dysfunction and hang around PR for information on GI issues. I have what some in the medical journals tend to lump in as Ischemic Colitis but my motility specialist says my pattern of mucosal damage is more consistent with Chronic Mesenteric Ischemia and, without an obvious occlusive cause, it's Non-occlusive Mesenteric Ischemia (NOMI) to give it its full handle.

    Symptoms are the same as for Gatroparesis (which I also have a diagnosis of) along with pain which is made worse by eating. It's interesting that you say you get relief from eating tumeric as that has vasodilating properties and it's only vasodilating meds that has ever helped my severe abdominal pain.

    Being non-occlusive, it was difficult to track it down as there is no specific test for case of NOMI and blood pathology is almost always normal until such time as the disease has almost progressed to bowel necrosis but two suspicious findings I had were an epigastric abdominal bruit (which any doctor can listen for) and a borderline elevated SMA flow velocity rate in a Mesentery Artery Doppler Ultrasound test.

    Apparently, those with IBS have a threefold increase in the risk of having Ischemic Colitis but as large vessel occlusion is almost never a factor, I believe it's more likely NOMI and it has a greater incidence than is suggested in the literature.
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3577613/
    [Frequently no clear cause for the ischemia is identified, making the diagnosis difficult. Angiography is rarely helpful in the workup of ischemic colitis, as large vessel occlusion is almost never identified. The most likely cause in these instances is localized, nonocclusive ischemia in association with small vessel disease. Patients with ischemic colitis tend to have multiple risk factors for vascular disease such as persons over 65 years of age, persons with cardiac arrhythmia, and thrombophilia. For unclear reasons, patients with irritable bowel syndrome (IBS) have a threefold increased risk for ischemic colitis.]

    I also have a diagnosis of Restricted Autonomic Neuropathy (mild OH with low blood pressure, don't sweat hardly) so for me, it is all somehow tied to autonomic dysfunction, the most likely thing being Autoimmune Gastrointastinal Dysmotility but I don't have an antibody finding for that although that can be the case.
    http://www.mayoclinic.org/medical-p...ces/autoimmune-gi-dysmotility-a-new-direction

    By the way, Non Ulcer Dyspepsia is a diagnosis I have often come across being given to people who have eventually turned out to be re-diagnosed as having Gastroparesis after doing a Gastric Emptying Study.
     
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  13. justy

    justy Donate Advocate Demonstrate

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    Yes ive heard of the clinic, and the DR - some find him great, others not as much. All NHS Drs are reluctant to dx MCAS - even if they will do so in their private practice.

    For me, living in Wales I have no access to any specialists for any of these issues as im not allowed to go cross border and we have no mast cell specialists or EDS specialists (yes I have that too). There are quite a lot of us patients floating around now with M.E/MCAS/EDS/LYME who get no or little treatment.
     
  14. mermaid

    mermaid Senior Member

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    That is really interesting @kangaSue I had not come across any of those conditions so googled them all and have a better understanding now. I can imagine it took a long time to get properly diagnosed.

    I have looked at some of the recent research re Non Ulcer Dyspepsia, which seems to be being done in Australia (forgotten the chap's name but he has done quite a bit of research on it), and it seems that Non Ulcer Dyspepsia or Functional Dyspepsia as they like to call it sometimes, is divided into 2 groups of people - one has predominantly motility problems and nausea issues, and the other one which tends to not have the motility issues but predominantly the burning pain problem. I think the first group is more common and more studied.

    However, I am in the 2nd group and do not have motility issues or nausea. I did have constipation a long time ago, but that turned out to be lack of thyroid hormone (for reasons I won't go into here). In fact I note that now my histamine issues are getting worse, that I have faster reaction to foods, and am on the loo more than I would like sometimes! When I went to see a gastroenterologist last year she clearly had no understanding of this whatsoever and recommended a drug to use which 1) was not appropriate as I DIDN'T have motility issues and 2) was considered too dangerous to use by the EU as it has risks for the heart. I did not use it!

    I would not exactly say that turmeric gave me relief as although it does not affect my stomach, burning pain in my nether regions or when I urinated was rather unpleasant. I am guessing it's just a different lot of mast cells in the body that were activated. I am going to give it a try again, by cooking it instead of raw, and smaller amounts, as I know it's good in other ways.
     
  15. Strawberry

    Strawberry Senior Member

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    Hi @mermaid I can't offer any advice as I am still in the learning stage also. But I have read that pea sprouts that you sprout in the dark will be a great daosin replacement. I can't vouch for it as my first sprouting experiment failed miserably, but I have heard from many people that found pea sprouts very helpful. You sprout like normal, but in the dark. They can be consumed up to 10 days of age, and then the dao drops significantly.

    Best of luck in sorting it all out. I feel this is quite the labyrinth disease.
     
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  16. mermaid

    mermaid Senior Member

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    Thank you @Strawberry that is very interesting re the peas! I had not heard that. I grow peas in the garden in the summer and still have some left I think so will give that a try. I am surprised that the poor little things think it's worth growing in the dark.
     
  17. ryan31337

    ryan31337 Senior Member

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    That's crap, sorry to hear it. Thanks for the heads up though, I'll try and see him privately...
     
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  18. Alexi

    Alexi

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    I'm going to throw my hat into the ring on this one.

    Is there a basic work-up to temporarily manage symptoms whilst combing through available research and formulating an action plan ?!? I wondered if some of the supplements I'm taking for ME/CFS are contributing to the problem ?
     
  19. mermaid

    mermaid Senior Member

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    Well I don't know what other people will think but I believe my gastric issues (non ulcer dyspepsia) has become a good radar for histamine! I take lots of supplements, and most I can tolerate, but the ones I cannot are Acetyl-l-Carnitine, D-Ribose and Spirulina. Of course we are all different but I had extreme reactions to them (as I also did with Low Dose Naltrexone).

    There may be a few others, but those are the ones I especially remember as I was very low in Carnitine on tests I did with Dr Myhill (lowest on record) and I had to eventually evolve my own way of supplementing that. I now do some transdermally by buying her transdermal magnesium and I put the Carnitine plus another supplement into a pot with it, and apply it to my legs and feet and wear long support socks to cover.

    I would try a week without any supplements at all - see how you are after that, and then reintroduce one by one. That is what I did.

    Obviously if it is MCAS then it's about more than histamine, but for a working work-up, as it were, I would try and lower histamine in as many ways as possible.
     
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  20. Alexi

    Alexi

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    Thank you for suggestions ! I'm sure many more will be interested as this develops
     

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