Your first steps in diagnosing Histaminosis (high histamine & low diamine oxidase – sometimes called Histamine Intolerance).
My heart goes out to the hundreds of people I come across in allergy forums looking for answers, muddling through on their own because they either can’t afford a proper doctor, or because they believe paying for medical care out of pocket is wrong. I repeat myself a lot out there, so I’ve put together a little flowchart that I hope will help.
If you are experiencing symptoms of: IBS, Crohn’s Disease, Gastrointestinal distress, irregular heartbeat, dizziness, nausea, vomiting, migraine, anxiety, depression, mania, rash, hives, urinary tract issues and frequency, uterine cramping, yeast-like infection, blurred vision, low blood pressure when getting up, pins and needles in feet, feeling of electricity in your fingers, feet or legs, neuropathy, tinnitus, suddenly falling asleep, convulsions, syncope, sinus infection (with negative culture, don’t let them give you antibiotics if it is!!), blocked nose, persistent sore throat, all with negative culture or coming up empty in diagnostic tests…
Don’t allow them to give you medication anyway! That could make you worse*. I’ll tell you why in a bit. So proceed to…
Keep a food diary for a few weeks. If you notice your symptoms are related to food, remember that symptoms can take up to two days to appear, go to….
Find a doctor to do IgE allergy tests. If they are negative, don’t panic, go to….
Find a specialist who knows what biogenic amines are: Histamine, Tyramine, Tryptamine, Glutamine, Putrescine, Spermidine, Cadaverine and others. You can test negative for allergies but have a biogenic amine sensitivity or intolerance that could give you all the symptoms listed previously.
BUT make sure he also knows what Diamine Oxidase (DAO) and Monoamine Oxidase (MAO) are before your consult. if he doesn’t, don’t go! These enzymes are responsible for degrading two of the most common, or at least most commonly identified, biogenic amines (Histamine and Tyramine respectively).
If your tests come back negative for biogenic amine sensitivity but with high histamine and low DAO, welcome to my club. Histaminsosis or Histamine Intolerance. Get your low histamine diet, hopefully medical trial of synthetic DAO or whatever is on the market that you choose. If it comes back with extraordinarily high histamine, with or without low Diamine Oxidase, you might want to ask about Mastocytosis. But, a decent specialist who specialises in biogenic amine issues would already know this.
If you come back with low MAO or tyramine sensitivity you will likely be given a diet plan and possibly a DAO supplement since Tyramine is also influenced by it.
*There are over 100 medications that can affect the enzymes that degrade Diamine Oxidase alone. Suppressing DAO could lead to higher histamine levels which defeats the purpose. Be aware that even some antihistamines prescribed to lower the histamine suppress DAO!
Try not calling it an “intolerance”
I believe that one of the most important issues our growing community faces is that people are calling this condition an intolerance. If we want doctors to take us seriously then perhaps we should call it by a proper name like Histaminosis which is diamine oxidase blockade and the resulting high histamine. An intolerance is a bit of a weak name for the very serious illnesses that are the result of high histamine. I suggest reading Dirk Budka’s book The Histamine Confusion as a primer on the condition and also to discuss with your doctor.
Your doctor isn’t god…
They can’t possibly know everything under the sun and frequently deal with hypochondriacs (or worse – ever hear of munchausen’s by proxy?), so help them out by printing out some of the many studies (you’ll find them in the resources section of The Low Histamine Chef).
Know your stuff
Read, absorb, use a highlighter pen on relevant sections. Use one colour for tests, another for supporting studies (in the references section) and another for your symptoms. Make sure you provide your doctor with a colour coded key at the top of the document. I also suggest making two copies so you can go through them together and not lose your place (or momentum).
Be clear about what you want
Make a special note of the tests to be run and point out which famed medical institutions conduct them (Mayo Clinic, Mayr Clinic). Histamine level and diamine oxidase are necessary for a concrete diagnosis. You may want to also point out that these are the symptoms of mastocytosis. This could get the attention of the doctor. Now, you may be referred to an immunologist who wants to diagnose you with masto based on symptoms and or tryptase, but really the best way to diagnose is bone marrow. I suggest insisting on the histamine and diamine oxidase test first. I have friends with “masto” that turned out to be histaminosis.
Hold your ground!
Make sure you have a checklist of things to address/accomplish with the doc and refuse to budge from his office till you get what you want. Try not to get emotional – they will make a note in your file that will be hard to remove! Be cool, calm and completely together. Lay out your case logically.
Be prepared to accept…
That you may not have histamine intolerance. There are many conditions related to histaminosis (histamine intolerance): mastocytosis, mast cell activation, hypersensitivity disorder, viral infections and a few more.
Or, you could have other biogenic amine issues like low monoamine oxidase (MAO). I have that too!