Mast Cell Disorders Forum - MTHFR defect? undermethylation associated with not clearing histamine

Doozlygirl Mentor Offline Posts: 262 Wisconsin	Re: MTHFR defect? undermethylation associated with not clearing histamine Reply #15 - 09/10/12 at 16:25:56 Just sent in my 23andMe sample today. I'm interested in the same things. Maybe we can help each other figure this out? Lyn
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Julie T Tutor Offline I Love YaBB 2! Posts: 73	Re: MTHFR defect? undermethylation associated with not clearing histamine Reply #16 - 09/10/12 at 19:16:24 Lyn, that sounds great. How long does it take to get results?
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Doozlygirl Mentor Offline Posts: 262 Wisconsin	Re: MTHFR defect? undermethylation associated with not clearing histamine Reply #17 - 09/10/12 at 19:31:49 I've read anywhere between 4-6 weeks to get results. Meanwhile there are surveys to complete online. When you get the kit in the mail, you'll need to register the kit online on their website and you'll see the surveys to complete. It did mine over several nights. Lyn
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Julie T Tutor Offline I Love YaBB 2! Posts: 73	Re: MTHFR defect? undermethylation associated with not clearing histamine Reply #18 - 09/11/12 at 05:12:29 Thanks Lyn. I am anxious to see if she has CBS mutation which effects sulfite breakdown. Also COMT which would may explain anxiety, fear, ocd perhaps...all so complicated but may help us figure out some management of her symptoms. I am trying to learn all I can.
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PJP123 Guiding Light Offline I Love YaBB 2! Posts: 193	Re: MTHFR defect? undermethylation associated with not clearing histamine Reply #19 - 09/12/12 at 14:46:19 23andme accepted me in the study! Maybe I will get some answers. I'll post when I find anything out.
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Julie T Tutor Offline I Love YaBB 2! Posts: 73	Re: MTHFR defect? undermethylation associated with not clearing histamine Reply #20 - 09/13/12 at 04:49:45 Great! maybe more people will be interested in participating and we can help figure this out together!
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deblevstern

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Re: MTHFR defect? undermethylation associated with not clearing histamine
Reply #21 - 09/21/12 at 10:39:07

Can one of you help me. I don't understand what this means. I was tested for MTHFR and this is the result."heterozygous for the A1298C mutation and normal for the C677T mutation in the MTHFR gene. This result is not associated with coronary artery disease and venous thrombosis"

Would one of you who knows please tell me if this fits with MCAS? I also have a small aortic aneurysm...I am following...

I was diagnosed by Dr. AFrin based on high Heparin and symptoms. I may get a second opinion from Dr. Castells.
Thanks for your help. Debbie

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Doozlygirl

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Re: MTHFR defect? undermethylation associated with not clearing histamine
Reply #22 - 09/21/12 at 11:02:26

Debbie,
I am out of town now, but have my notes at home which lay this out and translates your question for us. Off the top of my head, this means you have a defect in one of the detoxification pathways in your liver. I believe proper supplementation will create a work around for you to overcome this defect.

Maybe someone will chime in, if I don't respond before Tuesday, send me a PM (forget stuff often due to brain fog) and I'll respond next week.

Meanwhile check out the links on this thread which should help some.

Lyn

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Doozlygirl

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Re: MTHFR defect? undermethylation associated with not clearing histamine
Reply #23 - 09/25/12 at 07:53:32

Debbie,
Check out this link, which has a pretty comprehensive description of the two gene defects.

http://nwhealthcare.net/index.php?id=64

Looks like you have one gene defect at the 1298 location. This defect is associated with chronic illness, not the typical cardiovascular or stroke symtoms related to defect in the other gene.

Lyn

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deblevstern

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Re: MTHFR defect? undermethylation associated with not clearing histamine
Reply #24 - 09/25/12 at 14:41:11

Thanks so much Lynn. From what I read 40% of people have the heterozygous A1298C mutation in the MTHFR gene,as I do and that it doesn't seem as dangerous as the homozygous or combination. Still, I realize I need to do more research into this. Am grateful to you for all your wisdom.

Anyways, would you please clarify if this is related to MCAS??????

Also, do you know any doctors who treat this. I'm not sure what to do about it...if anything...Debbie

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Doozlygirl

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Re: MTHFR defect? undermethylation associated with not clearing histamine
Reply #25 - 09/25/12 at 17:02:44

Debbie,
I literally just got my 23andMe results this evening. I still have to find my SNPs in the program. Once I figure out what I am regarding this topic, I'll be able to share more.

Meanwhile, to answer your question, Is this related to MCAS? I believe that if one can't properly breakdown certain products, like histamine, sulfites to sulfates or folic acid, then the body can react to these toxins in the body.

I have been focusing my reading on detoxification (how body breaks down molecules, neutralizes the molecules, and eliminates the molecules) as a way of diminishing my existing symptoms. This evening I attended a local symposium on metabolic detoxification using medical grade nutriceuticals. I just figured out I will need to find a functional medicine physician to help me with all this, meaning a naturopath who graduated from one of the handful of naturopathic medical schools in the country.

I'll share more as I learn it, but I'm struggling tonight to figure out how to find my SNPs. I did download the raw data, but it won't open, and I am still looking for prometheus to sort the data for me.

Lyn

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Futurehope

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Re: MTHFR defect? undermethylation associated with not clearing histamine
Reply #26 - 09/27/12 at 05:49:23

I haven't read the entire thread, but wanted to comment about having your genetics read and stored by 23andme.

You have to realize that this company has said that they are not responsible if someone manages to break into their data and retrieve the genetic records of those therein.

IOW, in one location there resides a potential gold mine of info. People with genetic defects will be identified. This info can be used against you.

Carry on. I understand why people are so interested in getting well. I understand that people can currently look into whatever health records I have and do what they want.

I guess it is the idea of knowing how I fare genetically that keeps me from having my personal genetic info kept on someone's database.

I do not make a judgment as to anyone else who participates in this.

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« Last Edit: 09/27/12 at 12:54:25 by Futurehope »

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Doozlygirl

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Re: MTHFR defect? undermethylation associated with not clearing histamine
Reply #27 - 09/27/12 at 06:13:23

Futurehope,
I hear you loud and clear and am skeptical myself. My 23andME online profile is similar to my online profile on this forum, DINET, or other online health related resources, I use an anonymous name to front my health history.

I feel the same way about financial health, and choose to take extra precaution with my financial information. I am really skeptical of the online security of banking information, credit card information and medical records.

Prior to signing up, I did check into the credibilty of the physicians involved with the MPN program of 23andME, and was excited to have this awesome opportunity to participate. At the same point, anyone could use my the online results I share here against me as well, but I have been ill far too long to not take advantage of connecting some major dots in understanding the biochemistry of my unwellness. I have weighed the risks verse benefits of the situation and have chosen to participate in this project and online forums. At this point I have gained so much in terms of knowledge and ability to personalize my own treatment by opening up myself this way.

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PJP123 Guiding Light Offline I Love YaBB 2! Posts: 193	Re: MTHFR defect? undermethylation associated with not clearing histamine Reply #28 - 09/27/12 at 10:10:20 I chickened out of sending my dna back because of the disclosure that you have to sign. I'm afraid that I may be uninsurable down the line if they find some defect. Too scary. My family already is dealing with identity theft and phishing, so I don't want anymore info out there.
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Joan

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Re: MTHFR defect? undermethylation associated with not clearing histamine
Reply #29 - 09/27/12 at 15:37:19

I have concerns about the effect for people's children down the road. If you have a genetic defect, that might cause a problem for a child later. Also, it's the wife of the originator of Google who started this company. I don't know anything about her, but it made me wonder. In the right hands, this could be helpful to millions. In the wrong ones....

I don't think a pseudonym protects anything, as it is associated with your address and probably other identifying information in their database. And, just like the "cloud," sometime someone will get into it. Whether that will hurt anyone in particular, maybe or maybe not.

I think this is one of those things that is up to the individual. Risk vs. benefits. I think I need more information on how this might help me before I sign up, but I can clearly understand why people would want to do it.

Lyn, what are the reputable naturopathic schools in the U.S., in your opinion?

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Joan

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