“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!).
I 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!).