Welcome, Guest. Please Login
MCD - Mast Cell Disorders
  Latest info can be found on the YaBB Chat and Support Community.
  HomeHelpSearchLogin  
 
Pages: 1 2 3 
Send Topic Print
MTHFR defect? undermethylation associated with not clearing histamine (Read 4289 times)
Julie T
Tutor
**
Offline


I Love YaBB 2!
Posts: 73

MTHFR defect? undermethylation associated with not clearing histamine
09/01/12 at 20:31:24
 
I wondered if anyone has MTHFR which is a genetic test that determines if you are missing an enzyme to break down folic acid.  I ask because I am compound heterozygous (have both defects) which probably means my daughter has it too.  I was looking up too much histamine and found info about undermethylation. The methyl cycle is crazy complicated. I just wondered if anyone knew if it connected to mast cells and their release of histamine.  I was diagnosed by a hematologist after a miscarriage and wondered if those that have seen Dr. Afrin may have been tested-thinking he is aware of this problem?  

I just got to thinking that my daughter may be having trouble clearing the histamine too.  She has many of the brain symptoms listed for one of the defects.  She just recently started eating lots of Rice Chex.  she can only eat a few foods.  Well it is fortified with folic acid.  if she has the defect she cannot break it down.  then you will have symptoms of too much folic acid which fit a bit of my daughter.  So we will stop the fortified cereal.  Also interesting is she reacted to enriched white rice (also fortified with folic acid).  

just thought I would share...

Back to top
 
 
IP Logged
 
Doozlygirl
Mentor
****
Offline



Posts: 262
Wisconsin
Re: MTHFR defect? undermethylation associated with not clearing histamine
Reply #1 - 09/03/12 at 13:33:59
 
Julie, I highly suspect that some of my issues are related to methylation and/or sulfonation issues.  I am hoping to learn more from 23andme, as others have learned if they have the gene defects through their saliva.  

I'm starting with the two main pathways of liver detoxification, phase I and II.  So far, I have picked up that any B-12 or folate supplements have to be in the bioactive formulation, such as methylcobalamin and methylfolate.  

I just started really delving into this topic and would love to hear what you've learned and which resources you've found helpful.  

Thanks, Lyn

Back to top
 
 
IP Logged
 
Julie T
Tutor
**
Offline


I Love YaBB 2!
Posts: 73

Re: MTHFR defect? undermethylation associated with not clearing histamine
Reply #2 - 09/03/12 at 16:47:03
 
I found a lot of great info on www.mthfr.net.  i listened to dr lynch's 90 mins youtube video on MTHFR.  very complex and informative. Apparently if you treat with reduced form of b12 and folic acid and still not well it is good to test other genetic defects and one is called HNMT which is an enzyme that processes histamine (main enzyme is DAO).  I am very curious to see if there is metabolic issues going on with my daughter. Unfortunately many dr's are not aware how MTHFR can effect mental function it is not just about cardiovascular system. I would check out that link...very interesting...
Back to top
 
 
IP Logged
 
Doozlygirl
Mentor
****
Offline



Posts: 262
Wisconsin
Re: MTHFR defect? undermethylation associated with not clearing histamine
Reply #3 - 09/03/12 at 17:53:46
 
Julie,
Have you seen this forum on CFS/ME?  THere are tons of detox threads of interest.  

http://forums.phoenixrising.me/index.php?forums/detox-methylation-b12-glutathion...

Lyn
Back to top
 
 
IP Logged
 
Joan
FORUM ADVISOR
*****
Offline



Posts: 1433
Colorado
Re: MTHFR defect? undermethylation associated with not clearing histamine
Reply #4 - 09/04/12 at 06:57:15
 
  Will one of you please explain a few things to the forum, in lay terms, about how this is relevant to MC patients.  Most of the articles on the subject are very scientific, and it's hard to tell how this relates to mast cell disease, except for enzymes that break down histamine.  Here are a few questions.  Maybe others have some, too.

What are methylation and sulfonation?

Who, besides the "23 and me" project, tests for these gene defects?

How does a MTHFR defect affect mast cell disorders?  

Is it applicable to SM and MCAS?  If so, how will this knowledge help MCD patients?

  I'm not sure to exactly what you're referring when you speak of liver detoxing, but if you're going to do it, it should be done with caution.  Any type of dramatic change in the body can trigger symptoms, in addition to the triggering potential from ingesting new supplements or meds.

 I would recommend contacting your mast cell specialist before beginning any detoxification process.  It's important for people to know that the experts in mast cell disorders have not indicated that detoxing is a cure or remedy for MC disease, and we don't know whether they would think there are reasons to do it or not.

  I don't mean to sound negative, as I've done a lot of experimenting with various modes of healing and don't oppose them. I've found a variety of helpful supplements for myself.  Just recommending caution and not wanting people to potentially cause any harm to themselves.


Back to top
 


Joan
 
IP Logged
 
PamH
Mentor
****
Offline



Posts: 446
Indianapolis, IN USA
Re: MTHFR defect? undermethylation associated with not clearing histamine
Reply #5 - 09/04/12 at 08:15:59
 
I have a question...is MTHFR a cuss word?!! Wink  
Haha I'm laughing at myself because I have no idea what you all are talking about!
Pam
Back to top
 

Pam
 
IP Logged
 
Julie T
Tutor
**
Offline


I Love YaBB 2!
Posts: 73

Re: MTHFR defect? undermethylation associated with not clearing histamine
Reply #6 - 09/04/12 at 10:30:40
 
Joan, I am with you and how does this relate to MCAS?...I was hoping other people may have connected...what got me wondering is when I read about patients having trouble clearing histamine they may be undermethylators...still learning this whole methyl cycle.  I believe the bottom line is there is probably a genetic link to all of this stuff.  I don't think all the dots have been connected yet in science.  Dr. theo talks about the high incidence of mast cell issues with autism and many autistic kids have the genetic defect (missing the enzyme) to convert folic acid - it is called MTHFR -positive.  it does sound like cuss work, lol!  Having two markers occurs in 15-20% of the population.  Dr. Lynch says it relates to many health conditions on his site -like allergies, chronic fatigue...

I will ask dr castells for sure and if I learn anything i will share.  The bottom line is avoid enriched foods that contain the synthetic folic acid if you are missing the enzyme to break it down.  Also you may need to supplement with reduced form of b12, folic acid and b6.  Sonora lab does the genetic test and it is generally covered by insurance.  it is often used to detect risk for blood clots etc..however it is also screened in autistic community etc...

I brought this up here because generally hematologist work this up and I know dr afrin sees many mast cell patients and maybe there is a connection - I don't know. I do know that MTHFR and MCAS relate to the immune system.  

They may be very separate issues...i was seeing if any of the experience members ever heard of it before?  I certainly would not want anyone to start experimenting...

what I will say is since my daughter stopped the rice chex cereal (fortified cereal) she is coming out of the rage we had this w/e.  it may be the preservative but I am really thinking it is too much folic acid in her system...

sorry if this is off topic...
Back to top
 
 
IP Logged
 
Doozlygirl
Mentor
****
Offline



Posts: 262
Wisconsin
Re: MTHFR defect? undermethylation associated with not clearing histamine
Reply #7 - 09/04/12 at 19:27:17
 
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

Back to top
 
 
IP Logged
 
Julie T
Tutor
**
Offline


I Love YaBB 2!
Posts: 73

Re: MTHFR defect? undermethylation associated with not clearing histamine
Reply #8 - 09/05/12 at 16:20:39
 
Lyn,  wow you have been a busy girl researching. I am no where near your efforts.  I still am confused however I too think there is a metabolic/immune issue with my daughter.  

My daughter does not have a formal dx of MCAS yet.  Mediators negative.  She has very hight total IgE was up to 2200.  Can you participate in 23andme without formal dx - I would guess not.  

I am interested in getting the genetic test for HNMT (to see if missing one of the enzymes to break down histamine).  

I would love to hear what others have learned. I wonder what dr theo has to say about this too?  he is so knowledgable and is working hard in the autistic community.

we saw our naturopath today and she said there is new research coming out about MTHFR and how it contributes/causes many illnesses...

I need to reread your message some more to understand.  I feel like biochemistry all over again...I am glad researchers are working on figuring out genetic links which may find cures/good treatments.  

Lyn, dyes are a big problem for my daughter too.  she has chemical sensitivities - I read this ties into MTHFR issues as well.  

I did read about niacin and in fact used it while daughter was raging and it calmed her down for a bit.

1 out of 5 people in North America are missing the enzyme. I also read that enriched foods may be linked to the rise in cancer due unmetabolized folic acid which decreases natural killer cells.

Thank you for all your knowledge.
Back to top
 
 
IP Logged
 
Doozlygirl
Mentor
****
Offline



Posts: 262
Wisconsin
Re: MTHFR defect? undermethylation associated with not clearing histamine
Reply #9 - 09/05/12 at 19:57:25
 
Julie,
My pleasure.  I believe that 23andMe has accepted several patients with suspected MCAS.   I believe it is important to mention the name of the doc that is working with your daughter.  Mentioning Dr Afrin and his work on the TMS advisory board seemed to help me.  

Have you found a genetic test/lab for HNMT?   Nice to hear that your naturopath is aware of MTHFR.  

I firmly believe that our environment in the US is way more toxic than reported and contributing or responsible for chronic illness.  Doesn't surprise me that 20 percent of North American population is missing the enzyme.  Pretty sad, huh?  

Lyn  
Back to top
« Last Edit: 09/06/12 at 05:43:11 by Doozlygirl »  
 
IP Logged
 
mommy2seanp
Tutor
**
Offline



Posts: 94

Re: MTHFR defect? undermethylation associated with not clearing histamine
Reply #10 - 09/06/12 at 03:54:27
 
Thanks for all the information!  Wanted to keep an eye on this thread:)

Julie, if you write to 23andme and let them know your daughter is seeing Dr. Castells in October and has a probable diagnosis from your local doc that might do the trick.

Back to top
 
 
IP Logged
 
Julie T
Tutor
**
Offline


I Love YaBB 2!
Posts: 73

Re: MTHFR defect? undermethylation associated with not clearing histamine
Reply #11 - 09/06/12 at 18:58:11
 
Thanks I just applied for study and they wrote me today and asked some more questions...so lets hope they say yes...I mentioned dr castells in October and local dr working with her.  Fingers crossed:))

Back to top
 
 
IP Logged
 
Joan
FORUM ADVISOR
*****
Offline



Posts: 1433
Colorado
Re: MTHFR defect? undermethylation associated with not clearing histamine
Reply #12 - 09/07/12 at 15:24:14
 
Anyone can join the study and be analyzed, but without an MPD there's a hefty fee.

In their literature online, they have a section regarding the MTHFR defect, but it only discusses neural tube defects, which they say can be avoided in most cases by supplementing with folic acid during pregnancy.

I will be interested to know what any of the MC expert doctors have to say about this.

Thanks for the info.
Back to top
 


Joan
 
IP Logged
 
Julie T
Tutor
**
Offline


I Love YaBB 2!
Posts: 73

Re: MTHFR defect? undermethylation associated with not clearing histamine
Reply #13 - 09/07/12 at 17:47:24
 
Joan I will bring my daughter's lab results to castells( i am sure she will positive for MTHFR) and see what she has to say...I will share:)))
Back to top
 
 
IP Logged
 
Julie T
Tutor
**
Offline


I Love YaBB 2!
Posts: 73

Re: MTHFR defect? undermethylation associated with not clearing histamine
Reply #14 - 09/10/12 at 13:51:02
 
Just got an email my daughter was approved for the 23andme study.  Kit being mailed out tomorrow.  will this test help us unravel the key?  Well it is free so i figure more info the better. I wonder how long to get results.  Will Dr. castells find any of it useful?  I am curious if my daughter has any genetic mutations causing her symptoms.  Pretty sure MTFHR will be the same as mine.  I am thinking she is not breaking down sulfites after reading the list of foods on it.  Some of her highest allergic foods on RAST test.  Plus she feels bad if she has them. I hear there is a test on the 23andme that will tell us that (CBS). It is all foreign and complicated.
Back to top
 
 
IP Logged
 
Pages: 1 2 3 
Send Topic Print