Personally, one of the hardest things about managing all my autoimmune diseases isn’t all the pills I have to take to stay healthy or all the food I can’t eat. I do hate having to do so much research and read so many papers to learn about what is wrong with me, but at least I learn something through that. The hardest part is trying a new treatment and having it harm me. But this time, the harm led to answers.
Earlier this year I tried taking Omega 6 for my skin. It actually cleared up all the keratosis pilaris, but it put a ton of weight on me and made me feel awful. Anyone familiar with research on Omega 3/6 ratios won’t be surprised. Obviously I’d rather body acne than that.
Right after that, a hormonal supplement that my doctor has me on was unavailable everywhere, so he had me switch to something similar. Whatever small difference was in it caused the same problems. Last year I had also found a supplement that gave me incredible levels of energy but destroyed my stomach.
All of these experiments happened way too close to or during hiking season for me, so I really was not in the mood to try anything else. But my body was still fighting me. My doctor and I have always thought there is at least one more big cause of my generalized inflammation. And I finally found it.
It’s the histamine intolerance, stupid.
For months this year I’ve had slight wheezing now and then. It only rose to the level of “a bit annoying and just strange” and maybe also “OH G-D WHAT NOW.” In September, I mentioned it to my doctor. I still need to get some allergy tests and figure out more there, but he mentioned I might have histamine intolerance. I was skeptical in part because, aside from seasonal allergies, I don’t really have allergy symptoms. After some research, I also found out that taking “histidine” can reduce inflammation, so I bought that after checking interactions with all my other vitamins, drugs, and supplements.
I made the best mistake. Within weeks, my joints were really painful, my muscles were more sore, I gained 20 lbs, and my menstruation became extremely irregular. I gave it some time and then stopped it. Sure this wasn’t fun, but this was huge news for me. Taking the building blocks of histamine intensified multiple existing diseases and caused weight gain. I emailed my doctor and we agreed—histamine intolerance.
This was particularly great news because it has me wondering if that caused my fibromyalgia or maybe even polycystic ovary syndrome (PCOS) and endometriosis. Maybe it causes the other weight that refuses to leave my body no matter how healthy I live. Finding the source would be incredible!
The solution for many with histamine intolerance is to take the digestive enzyme, diamine oxidase (DAO). So I bought that and started taking it. The first few weeks I was exhausted. I now think that may be because it was clearing all the extra histamine out of my system. After that, I had a ton of energy and food gave me energy! I can’t stress how unreal that it is for me. Usually food exhausts me and makes me feel at least a little bad. Because of that, I assumed this was all tied to insulin resistance. But digestive histamines can cause similar problems for people with intolerance.
My skin also cleared up. I’ve dealt with body acne an keratosis pilaris for most of my life. It became pretty bad and no treatment made a big dent in it. A specific body wash, spironolactone, and a skin probiotic made it all less annoying and stopped most of the cystic acne. And laser hair removal actually helped reduce it too. But it should not have been a problem after all this plus tons of other treatments I’ve tried that failed from body scrubs to creams. Just six weeks on DAO and it is almost GONE. Because PCOS often leads to cystic acne, and the treatments stopped that part of it, I thought it was all hormonal.
And maybe I wasn’t entirely wrong. Increasing histamine worsened my fibromyalgia, endometriosis, and PCOS. I’m not yet ready to say that my histamine intolerance caused those diseases, but I do think it’s a possibility. Over time if my symptoms ease up, I’ll have my answer. Histamine intolerance is known to cause hormonal issues though, so if it caused or worsened these diseases or my insulin resistance, I wouldn’t be surprised.
Too much of a good thing
I read online that a lot of people take extra DAO when eating high-histamine foods. And unfortunately they are my favorite foods. Because it wasn’t doing much for me at first, I tried 2 pills before meals and coffee instead of 1. It really did kickstart progress for me for the first month, but then it caused dehydration. Once I reduced it back down to 1 pill, I started to feel great again. Now, I’ve actually stopped the spironolactone completely (down from 75mg) and I will be stopping the skin probiotic soon—I just can’t tell it apart from all my other pills in my pill cases.
What is really fascinating about this is that all the skin treatments I take serve to reduce the amount of liquid in certain parts of my body and make the acne less … well, gross. The DAO seems to have a similar effect. I have not yet figured out exactly how it works, but apparently histamine plays a role in fluid regulation, and that may be the answer.
Going forward
I’m really excited to see where this goes. I’m also planning on cutting out the gelatin I take to cushion my joints—we’ll see if I still need it! Histamine intolerance can also cause a runny nose, which I have when I eat. Honestly it’s the least of my problems so I never thought much about it. But I’m excited to see if that goes away.
If your body is as terrible as mine and nothing seems to work, it might be worthwhile to see if your doctor would be open to looking into this as an option. Like many autoimmune diseases, it mimics others. But you might have something else entirely.