“Do I have a histamine problem?”

“Dear Jak.  I have x, y and z symptoms.  Do you think I have a problem with histamine?”  This is such a common question I thought I’d write my answer in a post to save re-typing it 😉

I’m not a Doctor and even if I were it would be unethical for me to diagnose someone with any medical condition over the internet, bearing in mind I don’t have access to that person’s medical notes, don’t know their full medical history, haven’t viewed their test results and have never met or spoken to them.   Trust me when I say I totally understand the isolation and frustration in being sick and not being able to work out what’s wrong, especially when every Doctor you visit either says nothing is wrong or you get a different diagnosis depending on who you see, but following a total stranger off the Internet’s opinion isn’t the answer.  If you have a suspicion that you have a particular illness you have to find a Doctor who specializes in that condition and have it checked out.

Histamine seems to be a bit of fad at the moment with every Tom, Dick & Harry thinking they have a “histamine problem”.  There’s no such thing.  Histamine is only one of two dozen mediators (or chemicals) released by mast cells when they are faulty, or by the immune system when it  orchestrates an allergic reaction.  If you have obvious signs of histamine release, eg. hives, it is only part of a much wider disease process.  This blog discusses both Histamine Intolerance (HIT) and Mast Cell Activation Disorder (MCAD) because these are the problems I myself suffer from (for a brief explanation of both of these diseases see my ‘Guide to Mast Cell Diseases’ page).  I am clueless to any other diseases which affect histamine production, including allergies, auto-immune diseases or other types of inappropriate immune responses.

If you have chronic hives I’d say it’s likely your body is over-producing histamine, but the underlying reason for this could range from being allergic to dogs then petting one, to having life threatening Mastocytosis………and anything inbetween.  If you have gastro-intestinal symptoms you could be suffering from Coeliac disease……or indigestion…..or about 100 GI diseases/allergies/intolerances inbetween (not to mention all the non-GI diseases such as Ehlers-Danlos which also affect digestion!).

Cartoon of fortune tellerI totally understand my readers needing help in figuring out their issues and am always more than happy to answer any specific questions about my experience with either ME, EDS, HIT or MCAD and to point readers in the direction of sources of further information.  But I’m not about to guess about a total stranger’s health based on a short paragraph they’ve written on my blog.  My advice to anyone who thinks their body is over-producing histamine is to please see an allergist or immunologist and get some proper allergy testing done.  Get your tryptase levels measured to rule out Mastocytosis.  Get your DAO levels measured to rule out Histamine Intolerance if food is your biggest trigger (as it was mine).  Or if your symptoms are more widespread find a Consultant clued up in mast cell activation disease and who can properly test your histamine, prostoglandin, heparin, chromoglanin A and leukotriene levels (mast cell disease is so much more than a simple histamine disorder).  You can’t simply guess what might be wrong with you and self-treat in the hopes you’re doing the right thing.  I worry about some of my readers who are following hugely restricted diets because they might have a problem with nightshades, and they might have a gluten sensitivity and they might have a dairy intolerance and they might have an oxalate problem and on top of all that they might have a histamine problem – they end up with diets so limited they’re much more likely to have some serious nutritional deficiencies which are going to make them ill.

I do know how hard it is to have HIT or MCAD diagnosed, particularly in the UK, but these are potentially life-threatening illnesses – you cannot treat them on your own.  MCAD has serious implications for things like CT/MRI scans with contrast dye, anaesthesia for operations, dental procedures and drug prescribing, plus complications such as osteoporosis and GERD which can lead to stomach and oesophageal cancer – it’s not simply a matter of restricting what you eat (if only it were that easy!).

 

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9 thoughts on ““Do I have a histamine problem?”

  1. Marley

    Can you tell us more about the tests for histamine intolerance? My Allergist and Dr. Castells in the US gaffed it off as unimportant. Thank you. Marley

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  2. Marley

    Also, do you think you can be harsh at times to someone out there who is seeking clues. We know you are not a a MD. Can you be a bit kinder? Than you. Marley

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    1. bertieandme Post author

      So you’re telling me off, questioning my HIT diagnosis but still want me to be nice and help. Just making sure I’m understanding all your 3 comments Marley before I reply properly.

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  3. Marley

    I’m not telling anyone off. The world is a much kinder place when we respect each other and offer love and guidance. I felt that you trashed your reader when that reader only wanted to know about histamine. You will not get sued for your answer. You help people. That is what you do so well. You have a disclaimer that you are not a MD. But you know so much more about histamine than most Allergists do. You do a great job. Be kind to your reader on histamine. They need help. We are all suffering here. Some of us don’t tell you how much. We love you and accept your bold and brash attitude.

    Marley

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  4. Elizabeth Milo

    You are spot on about diet. The Facebook group I started is full of poor souls eating five or ten foods. I started on the AIP protocol plus low-histamine and it caused more issues than it helped and now I’m in a sort of elimination vortex, just trying to eat as nutrient-dense diet as possible, but I haven’t solved my symptoms. In fact, I think I am more sensitive you histamine foods now than I ever was before the elimination diet (as you know, my identified triggers were menstruation, alcohol, “events”/excitement). People eliminate foods on a whim and don’t realise how, if it becomes long-term, it can alter your gut flora and cause many more issues. I’ve almost died maybe a dozen times and none of them could have been helped with diet. MCAD is very complex.

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    1. bertieandme Post author

      Well observed EM. I’ve never said this publically, but I’m convinced there are 2 reasons I’ve made a degree of recovery from severe ME and my friends haven’t. The first one I feel is too controversial to say out loud (!) but the second is that I never went down the diet route. I tried gluten free, and dairy free, and anti-candida etc. when I first became ill but only for 3 months. It didn’t help so I didn’t do it any more. But my friends, who it didn’t help either, continued for no reason I can fathom. They mostly now all have awful problems with loads of foods that I just don’t have! Yes I have to have low histamine due to a proven low DAO level and proven MCAD, but other than that I eat whatever the hell I like including shed loads of biscuits, sugar and cake (my friends are mostly all sugar free).

      Having said all that, as you rightly point out MCAD is so much more than food related. My hormones bugger my mast cells up like no-one’s business and nothing you eat or don’t eat is going to change that, especially if like me you are in peri-menopause which affects even healthy women in a huge way. xx

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      1. Elizabeth Milo

        Oh, I rue the day I started eliminating!!! And wish they had just talked out my uterus and ovaries when I was a kid! Just when i get this all figured out, I’ll hit menopause. We can’t win! Looking forward to getting together with a glass of wine and talking about that first controversial theory. 😉

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