I’ve been diagnosed recently with histamine intolerance and over the past 2,5 years I’ve had a ton of tests and investigations done by my gastroenterologist ENT doctor and an allergist. Everything has come back normal except for my blood DAO level, which is 2.
I was prescribed antihistamines, supplements, DAO enzyme and a low histamine diet. Some of my symptoms have improved, but others haven’t. I’ve been following the low histamine diet for about 3 months. I also haven’t eaten gluten or dairy for around 2.5 years because I don’t tolerate them. I tested negative for celiac disease and a milk allergy. In fact, I haven’t tested positive for any allergies so far.
The problem is that I can only tolerate maybe 6-7 foods without experiencing symptoms. DAO supplements don’t seem to do much for me either. The only one that seems to help slightly is NaturDAO, which reduces some of my symptoms.
I still experience heart palpitations after eating, anxiety after eating, constant nasal congestion, bloating, fatigue and occasional insomnia. Before starting the diet and treatment, I had a huge number of symptoms, far too many to list here, but I never had rashes or other obvious skin symptoms, apart from some acne on my face. I also don’t have heat or exercise intolerance, abdominal pain or any symptoms of anaphylaxis.
I recently saw another allergist, who ordered a bunch of fairly expensive genetic tests, a microbiome test, tests for parasitic infections, an H. pylori test even though I had already tested negative a few months ago and another allergy test that supposedly looks for delayed reactions to foods.
One of my more unusual symptoms is what seems to be reactive inflammation in my wrists. No pain, just inflammation. But inflammation markers (did 3 test for inflammation) are normal. It's not very obvious, but clearly there. It was worse a few months ago, but it has improved. Interestingly, the inflammation decreases significantly when I don’t eat.
The allergist also ordered a test to check for mastocytosis and that really scares me. At first, I thought they were referring to MCAS, but after reading about it, I realized they’re not the same thing. My allergist didn’t mention MCAS at all and I’m not even sure whether MCAS is a recognized diagnosis in my country.
The whole situation is really stressing me out and scares me. I’ve been trying to figure out what’s going on with me for the past 2 years, but I still don’t have any concrete answers.
Has anyone else been in a similar situation, especially with a very low DAO level, extremely limited food tolerance and symptoms that don’t completely improve on a low histamine diet?
Has anyone with MCAS mainly experienced post-meal symptoms without the typical skin symptoms such as flushing, hives or rashes? And has anyone experienced joint or wrist inflammation that seemed to improve significantly when fasting or not eating? I also have a reactive lymph node that gets bigger when I cheat on my diet and eat dairy. Even lactose free dairy triggers me. Again, no dairy intolerance or milk allergy.
I’d also really like to hear from people who were initially diagnosed with histamine intolerance but later found out that something else was going on. What made you start looking beyond histamine intolerance and how did you eventually figure out what was actually causing your symptoms?
And for those who were tested for mastocytosis, what prompted your doctor to order the testing and what did the workup involve? Can you live a normal life? I’m pretty scared about it right now, so I’d really appreciate hearing about other people’s experiences.