Methylation/MTHFR

I regularly receive comments about Methylation on my blog.  It’s not something I’ve looked into much mainly because:
a) It’s really fucking complicated and I kind’ve get the impression that even the experts are so new to the field they really don’t know what the hell is going on.
b) I feel like it’s just the latest fad in a long line of fads (like Paleo and coconut oil) – I appreciate this will not be a popular view but it’s mine and I’m entitled to it.
c) I can’t afford the testing so have no idea if I have a MTHFR mutation.
d) Even if you have the genetic mutation, it doesn’t mean it’s causing any disease.
e) I already seem to be following the vast majority of the “lifestyle” recommendations in any event.
f) Even if I do have methylation issues I can’t tolerate any of the drugs, and nearly all of the supplements, used to treat it.
Therefore, the whole area seems like a massive waste of my precious energy.

Dr Lynch seems to be the main man when it comes to Methylation issues, so I had a look on his website.  I’m reprinting his protocol below and my response to it:

Here are the common recommendations for supporting those with C677T MTHFR mutations:

  1. Limit ingestion of folic acid in fortified foods as you cannot process folic acid well.
    I don’t eat fortified foods, so that’s OK.
  2. Limit or cease taking supplements or drugs with folic acid in them. Talk with your doctor before stopping.
    I don’t take any supplements, folic acid or otherwise.
  3. Avoid folic acid blocking drugs such as birth control or Methotrexate.
    I don’t do this either.
  4. Avoid drugs which increase homocysteine such as Nitrous Oxide (most used in dentistry)
    Or this.
  5. Avoid antacids as they block absorption of vitamin B12 and other nutrients
    I take antacids because if I don’t I risk getting oesephageal cancer from un-treated GERD.
  6. Begin understanding which of your symptoms may be related to the C677T MTHFR mutation.
    I have so much wrong with me it would be impossible to tell.
  7. Measure homocysteine levels – properly!
    I can’t afford private testing and there’s no way my GP would prescribe it on the NHS as I’m not at risk of vascular disease.
  8. Inform your family members so they can also test for the MTHFR mutation
    The only family member I care about is my Mum and she’s already dying from something else.
  9. Find a doctor who is knowledgeable about MTHFR or is willing to learn
    Dream on.
  10. If you are pregnant, find an OB/GYN or midwife who is knowledgeable about MTHFR.
    Not applicable.
  11. Eliminate Gluten from your diet – especially wheat.
    I am so sick of everyone and his dog telling me not to eat wheat I eat it just to spite people.
  12. Eliminate or reduce Dairy from your diet. If you must have dairy, use Goat milk.
    Ditto with dairy.
  13. Sauna or sweat somehow (epsom salt baths, sports, yoga..) at least once to three times a week.
    I have a mast cell reaction to heat.
  14. Limit intake of processed foods
    Have done this for the past 20 years.
  15. Increase intake of whole foods and home-prepared meals
    And I’ve done this for the past 20 years.
  16. Eat the Rainbow of colors from fruits and vegetables – daily
    And I’ve done this for the past 20 years.
  17. Castor Oil Packs over your abdomen daily during times of pain, soreness, cramps
    Isn’t that a bit………slippery?  I much prefer my hot water bottle 😉
  18. Vegetable/Fruit Juice Diet with Chia Seeds during times of pain, soreness, cramps
    I drink veg and fruit juice daily.
  19. Limit intake of high methionine-containing foods if homocysteine elevated
    Having looked at the list the top 10 foods are dried egg (which sounds disgusting and I’ve never eaten in my life), seafood (banned on low histamine diet), soy products (also banned on low histamine diet) and meat (I’m pesco-vegetarian).  So I’m doing OK on the worst offenders at any rate.
  20. Coffee Enemas during times of detoxification or pain
    Ewwww!  People with EDS must be very careful of sticking anything up their jacksee due to skin which tears and perforates easily.  Plus any pressure sets off my dermographism causing histamine release, the very thing I’m trying to prevent.
  21. Filter chlorine from your drinking water, shower and bath.
    Like that is going to cure me.
  22. Drink at least two liters of filtered water daily mixed with vitamin C and electrolytes.
    I already drink the water, but eat sugar and copious amounts of salt
    so don’t need electrolytes.
  23. Eat smaller, but more frequent meals, throughout the day with some form of protein.
    I already do this.
  24. Limit protein intake to approximately 0.7 grams protein per kilogram of body weight.
    Hold on, I’ll just get my calculator out and measure every morsel of protein I consume in all of my 6 meals, every day.  Not.
  25. Remove mercury amalgams and root canals with a trained biological dentist.
    I can’t afford to do this, and even if I could I wouldn’t – not without anaesthetic and plenty of pain relief, both of which I’m allergic to.
  26. Avoid cooking, drinking, storing and heating in any type of plastic container.
    I already do this.
  27. Use an air purifier in your home and office
    And I already do this.
  28. Eliminate carpets from your home and install low VOC wood or tile flooring.
    And I’ve already done this.
  29. Eat grass-fed beef, free range, hormone free and antibiotic meats and eggs
    I don’t eat beef, but have eaten organic eggs for 20 years.
  30. Cook with electric stove and oven and remove gas stove and oven.
    I’ve only ever cooked with electric.

Soooo, it seems I’m already following about 80% of the Methylation protocol.  And I still feel like shit.

General Nutrient Recommendations for C677T MTHFR mutations:

  • Methylfolate
    Must admit, never tried it.
  • Methylcobalamin
    Mast cell reaction.
  • Betaine in the form of TMG
    Mast cell reaction.
  • NAC
    Don’t even know what this is.
  • Glutathione
    Mast cell reaction.
  • Pyridoxal-5-phosphate
    Would rather get B6 from my diet (salmon, sweet potatoes, white potatoes) than supplements I would probably react badly to.
  • Riboflavin
    Would rather eat B vitamins in my diet than supplements I would probably react badly to.
  • Curcumin
    Would rather eat turmeric in my diet than supplements I would probably react badly to.
  • Mixed tocopherals (vitamin E)
    Would rather eat vitamin E in my diet than supplements I would probably react badly to.
  • Silymarin (Milk Thistle)
  • Mast cell reaction
  • EPA/DHA
    Would rather get Omaga 3 oils from salmon in my diet than supplements I would probably react badly to.
  • Phosphatidylcholine
    Would rather eat eggs in my diet than take supplements I would probably react badly to.
  • Nattokinase
    Soy is not allowed on a low histamine diet.
  • Vitamin C
    If you’re juicing and eating fresh veg and fruit every day you’re already getting vitamin C.
  • Vitamin D3
    I get sunlight on my skin every day of my life and my last Vit D test was fabulous.
  • Comprehensive multivitamin/multimineral
    Why, if you’re already eating super well and taking Vits B, C, D and Omega oils from all the above supplements?
  • Probiotics
    Not allowed on a low histamine diet.

There’s also a small list of drugs to try, but with my allergy history I wouldn’t touch any of them with a 10 foot pole.

I know this area is a big deal for some of you and if it’s working, and you can afford testing and tolerate the recommended supplements, I’m genuinely happy for you.  But I can’t afford to get tested and having looked at the protocol I’m already inadvertently following most of it and it’s not helping me one iota.

Whether or not I under or over-methylate has no bearing whatsoever on my Ehlers-Danlos.  And as Dr Sam writes on Dr Lynch’s site: “Remember high histamine can be caused by poor diet and/or low levels of DAO in the gut or low levels of other histamine degrading enzymes in the blood which are entirely separate from methylation.”  Thank God someone is seeing the bigger picture.  My twitchy mast cells are caused by my Ehlers-Danlos (faulty collagen) and my problems with food are caused by low DAO (probably genetic), neither of which is affected by Methylation as far as I’m aware.

We’re all different, and that’s allowed.

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15 thoughts on “Methylation/MTHFR

  1. naturallymum

    I’m studying Dr Lynch’s course at the moment and complicated is an understatement! I have a physics degree and a chemistry a-level and it is pretty hard going. Very interesting though 🙂 I’d say be careful to anyone following the advice as it depends on exactly what mutations you have as to which bits are right for you. The methylation process is a delicate balance of many different factors and what’s right for one person is definitely not right for everyone and can make things worse.

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    1. bertieandme Post author

      Thank you for making me feel better that I don’t understand a word of it lol! I never was any good at science at school 😉

      I think it’s very early days and even the researchers are still just finding their way around the whole subject.

      Wise words on not just doing the protocol willy nilly. x

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  2. Robin

    How I LOVE your brutal honesty; I can relate!!! The editorialized comments are priceless – my personal favorites being #s 6, 9, 11, and 24. And, btw, it’s too much science for me, as well.

    Never stop being you! Hope you’re feeling better soon.

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    1. bertieandme Post author

      Thanks Robin 😀 . In my first draft I was much more brutal, but toned it down because I realize some people are really suffering with this and I didn’t want to appear unsympathetic. But then I read advice like “filter your bath water” and I just think “oh do shut the fuck up!” 😉 Jak x

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  3. kneillbc

    I have to admit, this is the first time I’ve ever heard of it. I looked it up, got as far as “Curing autism.”, and I stopped. Anybody who claims that they can ‘cure autism’ is overstating their claim, IMHO. There are lots of things that can improve, but ‘cure’ is such an overstatement- like Jenny McCarthy, who ‘cured’ her son’ autism, except, oops, it wasn’t autism after all… I worked with severely disabled kids when I was working. About half the kids on my caseload had autism. First and foremost, you learn that there is no one ‘autism’, there are different types, for sure. Ever person who claims that their ‘revolutionary’ ‘scientifically proven’ treatment ‘cures’ autism, I take a deep breath, sigh, and pray that they are not being taken for too much of a ride. Without fail, every single time, the ‘treatment’ slowly peters out, and is never mentioned again. I knew one family (unfortunately with more money than sense) who tried every single one that came along. If they had only focussed on what DOES work (things that help, but don’t cure), their son would have been so much further ahead.
    I don’t touch anybody who sells testing AND the remedy. It’s a conflict of interest. As if the test is going to tell me I don’t need anything. Besides- as I run down the list of things to do, I’m either doing them, or can’t do them. Cutting out dairy and wheat are my favourites. I live on Miniwheats and milk. If I couldn’t eat those, I would have to subsist on coconut oil, chocolate, salt and sugar. It’s not by choice- they seem to be the only things I can safely eat. I have to assume that the reason I can eat Miniwheats (or shredded wheat), is that it IS processed. Rainbows of fruit and veg are a far off dream….Milk thistle? I get anaphylaxis from smelling camomile tea. Yeah. No thistle is going into me!!
    I once went to see a naturopath, who knew my chiropractor. They had spoken about me, and he had said “I’m sure I can help.” Saw him, he said he’d call me back when he found a supplement I could take. He never called back! 🙂
    I don’t know if you have them in the UK, but I have actually found a brand of supplements that I can take (well, a few things anyhow). It’s called SISU. They use vegetarian gelatin, and their ingredients are well listed, and they try to keep it as simple as possible. No coatings, flavours, or ‘concentrated broccoli extract’ (I don’t even want to go there…). I can take their magnesium and Ubiquinol. The magnesium reduces my bruising, the Ubiquinol seemed to help a bit with overall inflammation. I ran out though, so I have to get more and analyze it further. SISU brand is expensive, but you get what you pay for.
    It is so hard to not ‘chase’ all these ideas. There are so many schemes out there- some are people who legitimately think that this is going to help, some who who are merely out to make a dollar. Research will tell which ones actually work, and which don’t. (Remember the crazy parasite theory- infect yourself with some African parasitic worm, and your immune system has to fight it, so it stops fighting imaginary invaders? Turns out all you are left with is your original ailment AND a ruined gut.).
    As my practical Mom used to say “If it sounds to good to be true, always ask how much it costs.”
    For now, I’ll be steering clear with you. My system, like most people with MCAS, doesn’t like to be pushed, it has to be gently, ever so gently steered in the right direction. I’m not risking anything unless the scientifically proven results are worth the risk. It may well turn out there us some validity to this, or it may not. I’ll wait.

    Karen

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  4. Traci

    I can sure relate. I got the 23 and me testing done, I do have the mutations. I tried learning and understanding methylation but it totally goes over my head. I wasted a lot of money on supplements that I could not tolerate. I asked my two doctors, who I feel are up to date on advances in science, and they both said that we don’t know enough about genetic testing to work with it. I am getting to the point where I don’t feel like I need to push for every diagnosis for every illness that I think I have because I know that since I cannot tolerate meds, there is really no point.

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  5. Hodel

    Thanks so much for this post. 🙂

    I could relate to almost every point! Except for a couple of points, I had to leave off eating most fruits and vegetables like one of your commenters (what’s up with that? I want to know…. because I really would like a good salad), but I also can’t eat most processed foods. I have a few more foods than they have, though.

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  6. Elizabeth Milo

    Here’s what I don’t understand about genetic testing: I had the 23andMe done and, yeah, there’s a bunch of mutations (not MTHFR, but a lot of others), just like everyone has. But no one knows whether my mutations are contributing to my illness, so what’s the point in my knowing about them? I also did the methylation blood panel, which I thought was more informative because it definitively showed I have abnormalities in my methylation cycle, but, again, I find it too complicated to treat effectively because it involves so many supplements and so many tests, so much time and money.

    I do appreciate how clear this post is, though, with the links and all. I’ve been getting a skin reaction to, I assume, chlorine in my bath water, but haven’t really looked into a filter, so you gave me a starting point.

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    1. bertieandme Post author

      Exactly EM. We don’t know enough about any of our genes yet for it to be helpful – it’s such early days.

      I get a rash from having a bath but it’s due to the heat, so it may not be anything about the water per se for you but the change in temperature. Lots of MCAD people struggle with sudden temp changes x

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  7. Kathy

    My juvenile sense of humor snickers every time I see “MTHFR”. Given what we go through, though, it is hardly a laughing matter….and MTHFR seems oddly appropriate. I recently went through a battery of tests at the National Institutes of Health (NIH) near Washington, DC, which included a bone-marrow biopsy and certain genetic tests. From the tests we will either figure out what is causing my anaphylaxis, OR I will get to be a human guinea-pig in a drug trial. Trying to move forward!

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    1. bertieandme Post author

      Yep, I always think M*****F*****r too Kathy LOL! And that word is totally appropriate for what we go through 😉

      Wishing you lots of luck with your test results – be interesting to hear what they say.

      Jak x

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