MTHFR, Histamine, And A Little About My MCAS Journey

I wanted to share this resource I came across while having a renewed desire to find the right supplements to try to live some semblance of a normal life. I came upon this helpful page which breaks down the relationship between MTHFR gene mutations and how it affects histamine levels (and other things). It is a site that sells products (that's not my goal) but still offers help in breaking this stuff down in less clinical language. I know it may be an oversimplification for a lot of people here, but I'm really sharing it for those who are just getting started on this confusing journey. I was about to post the link but realized it's against the sub rules, which is totally understandable. I found it on the Methyl-Life website. Sorry if mentioning it isn't allowed either, I don't use their products, just found the simplified explanation very helpful.

For background, I happened to do gene testing years ago and found out I have slow COMt, high homocysteine, and am heterozygous for the C677T polymorphism in the MTHFR gene. At the time, I was still putting all of the pieces together, but the relationship of everything is making more sense now. I have MCAS, EDS, POTS (like most everyone), and have found when the MCAS is controlled, so are the other two. Also recently diagnosed AuDHD. Over the past year I have come to realize that my high estrogen is a major (if not the biggest contributor) to my high histamine challenges. I was briefly on a low dose estrogen birth control pill and for those three months my ADHD was non-existent and I could tolerate food again. I have never felt so mentally healthy. However, the pill cause tremendous fluid retention and weight gain, and the consistent low estrogen caused excessive hair loss, so I stopped it. I'm just learning that poor methylation leads to poor estrogen detoxification, so that all makes sense now. Obviously, the estrogen component isn't relevant for everyone.

My main symptoms are intense pruritis (esp at night), joint pain/swelling, slight anaphylaxis, skin issues, congestion.

I absolutely cannot tolerate DAO & Quercetin, and LDN, Ketotifen, and Cromolyn caused significant overstimulation at very low doses. I can tolerate daily Vit D (with k), Zinc (with copper), and folinic acid. I rely on cetirizine (Zyrtec) to control/alleviate my symptoms, however I'm in the middle of a weeks long flare and the antihistamines are makine a small dent. I recently traveled to the Southwestern US (from the Southeast) and had an incredible alleviation of symptoms. Many people have said it, but location and environmental allergens really do seem to be a huge factor in MCAS severity. I live in one of the top 10 worst cities for allergies and the pollen is already high.

After searching this sub again for suggestions, I've slowly started to add Magnesium Ascorbate for Vit C, and TMG to help with homocysteine levels. I'm on day 2 and happy to say I'm tolerating a half dose of both so far. I'm sick of relying on antihistamines to just get by and I now have a renewed goal of supporting proper methylation and estrogen detoxification, thereby reducing histamine levels. Histamine levels are certainly not the only thing affecting people's MCAS symptoms, but it seems to be the main one for me.

Over the past year and a half since my MCAS diagnosis, I've spent countless hours scouring this sub (and the internet in general) for answers. It has been extremely helpful in understanding all of this often overwhelming information, as well as giving me ideas for treatments and supplements. I share all of this because although I am not feeling great, I'm not where I was a year ago, desperately trying to understand what was happening with my body. I remember that helpless feeling. So, for anyone who is currently in that position, I hope this helps in anyway. Finding others with the same issues and being able to ask questions has been a life saver for me.

Apologies for the length and any incoherence. The antihistamine fog is real, haha.

If anyone else has helpful suggestions for others just trying to figure it out, leave a comment. I'm grateful for those who generously contribute their experiences and helpful feedback on this sub; it's made a world of difference for me.