Doozlygirl
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Hi Joan and all,
Great questions, some of which I have pondering myself. Julie, I do not believe this is off-topic at all, I suspect this topic provides a biochemical explanation of histamine or sulfa intolerance/overload, and clearly extends to our bucket theory.
While, I do not hold formal expertise in this area, I have long considered my issues are due to a metabolic/immune disorder and have spent nearly a decade trying to understand how my body chemistry is broken. I'll do my best to connect some dots on this topic, as I figured out with me and address your questions. Bear with me, as I can tell already this is going to be LONGGGGG.....
Using mast cell priniciples, I'm trying to figure out why I am reacting to certain things, starting with the long list of meds I can't tolerate. I've sorted out the meds that are known degranulators, then the meds with yellow dye (a huge trigger for me). But there are a bunch of meds that I can't explain why I reacted. I have pulled the monographs for every med I have reacted to, and am comparing the chemistry of these meds for trends.
I've had longtime issues with various sulfa antibiotics (even those I am not supposed to react to) and noticed the others that I can't tolerate all have sulfa in them, (topamax, imitrex, HCTZ, etc). These other meds are not supposed to crossreact with sulfa, which just means I likely didn't have IgE reactions, but very well could have been mast cell reactions. Since sulfa medications are listed as a known degranulator on Mastopedia, I no longer believe I have a sulfa allergy, but that sulfa is a major trigger/intolerance for me. Incidently, FD&C Yellow and red dyes contain sulfa, possbily another reason I react to them in addition to being known degranulators. Which then got me thinking, thre are foods and beverages I don't tolerate (gave up or limited long ago). They contain sulfur, sulfites and sulfates, starting with wine, certain liquors, eggs, broccoli, cauliflauer, etc. My research over the past two years has lead to <sulfonation issues> on several occasions, so I have been following up on a hunch: I have long suspected that my body can't properly process sulfa and its metabolites to get rid of them, which lead me to read up on the body's processes to break down larger components into smaller ones.
Phase I and Phase II Liver detoxification is the biochemical process by which the body breaks down various things, especially medications into it's metabolites, or smaller components. The liver can add components such as in the case of methylation where it adds a methyl group, CH3, to change the component into molecules the body can get rid of through the bile, urine, sweat or feces.
Julie posted about Dr Ben Lynch, who shares ways to overcome a MTHFR gene defect, which causes missing enzymes, making it hard/impossible to break down folic acid. If Dr Lynch's firstline recommendations to overcome these missing enzymes don't work, he talks about how a secondary cause, such as defects in the sulfonation (breakdown of sulfa) pathway, or HNMT (the histamine breakdown pathway) or a dozen or so other points, which could be hosed, and impacting how the liver can break down various components.
23andMe is a personal genome service, which is offering its service for free (saving hundreds of dollars) to 1000 patients who have been diagnosed with a Myloproliferative Disorder (MPD), such as mastocytosis (They have included MCAS). This offering has been listed on the TMS website for months, and several of us have volunteered a saliva sample and answered multiple survey questions in exchange for genetic profiling. The first phase of this program lead to the discovery of the JAK2 gene in MPDs. There is limited time to apply, and I just saw a different thread posted here today with more information. Similar studies with sarcoma and I believe Parkinson's (don't quote me on that one) have already vetted new treatment options for each disease.
23andMe participants can find out scores of information, such as if they have either defect that causes the MTRFR driven enzyme defiencies, as well as a host of other SNPS or polymorphisms, where DNA genetic transcription errors have replaced correct molecules with a wrong molecule. This information can point to why these patients can't tolerate meds - Do they metabolize too fast, too slow, or can't break down at all etc?
These conditions all cause toxicity in the body. Just as overindulgence of histamine can cause issues in triggering mast cells, I suspect there are other toxic molecules that I can't break down - triggering my mast cells to degranulate, such as my personal theory with sulfa. While I have had limited success in a herbal liver cleanse in the past, I am not at all considering on doing that now. Thank you for your concern and I hear you, as I have issues with simple supplements at this point.
I am however, reading up on methylation, sulfonation and other liver detoxifying pathways to see if I can determine which breakdown pathways are broken, and how to fix them. From what I have read, some mast cell patients have found great sucess with the correct supplements in the most bioactive formulations at the lowest dose possible in addition to eating certain foods to fix those broken pathways and restore those missing enzymes.
I supsect this information may connect many dots for me in explaining why I cant tolerate certain histamine and sulfa containing foods/meds.
Last night I just read that Genova offers a methylation panel, but it is quite pricey. I'n not there yet, just anticipating what information my saliva will provide through 23andMe.
Julie, Have you read yet that niacin is a scrubber for overmethylation? I've also read that there is some debate if Folinic acid and/or methylfolate are the best supplements for undermetheylation. Also, I haven't yet taken my thoughts to Dr Afrin, but I'm thinking I'll first run this by my Primary doc, who graduated from Dr Andrew Weil's integrative medicine program, as is very tuned into these concepts. I'm not yet set to see Dr Afrin for several months. I'd love to hear his take on this.
If the bucket theory states there is a limit for how much of certain items we can tolerate, why do some people never have issues with triggers? If these lucky folks can break down those chemicals through any of the detoxification pathways, and get rid of them in any of the normal elimination channels, then there would be no backup or bucket limits.
What if our elimination channels are clogged and our breakdown pathways are broken with missing or incomplete enzymes and cofactors? Many of us have very limited diets and can't tolerate chemicals of any kind, so in my eyes, this wouldn't even be a stretch.
Great catch on the folic acid enriched foods, Julie.
I'd love to hear what others have figured out on this topic. I hope we can keep discussion going.
Best wishes, Lyn
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