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Post by Deleted on May 16, 2018 17:14:36 GMT -5
This question is particularly directed to celawson and Optimus, who might have some medical/scientific knowledge here, but input from anyone is welcome (and this won't be the only place I'm seeking it--I'll be asking my doctor, among others). Can anyone recommend any scientifically/medically sound nutrition-related sites? Also, I'd be interested in good sites discussing genetic medical issues. Thanks in advance for any input. TL/DR version: I just got my DNA test results back and it is mostly very good news. I don't have the really nasty genes for my dad's disease or Alzheimer's, which were my main concern. But I did learn one thing that seems like I should at least look into further. I have an MTHFR mutation that means I don't process folic acid very well. In other words, taking folic acid supplements doesn't help me, and it might well even harm me. That includes standard multivitamins, the folic acid supplementation the U.S. now does for all wheat products, and gobs of processed foods. There's apparently a good bit of debate about just how bad this issue is -- some sites seem to say all you need to do is get lots of folate in your diet, while others indicate that you also need to avoid all sources of artificial folic acid (supplements, wheat products) because it builds up in your body and can be toxic, and still others say you should do all that and also take a special (and expensive) supplement to get the necessary folate. One thing they do all agree on: the consequences of doing it wrong, apparently, are potentially pretty bad in the long term, since folate is pretty important. So do I believe the sites that say "STOP TAKING THAT POISONOUS MULTIVITAMIN AND AVOID WHEAT PRODUCTS NOOOAAWWWW!"? The ones that say, "meh, just eat lots and lots of spinach and lentils and you're probably fine"? The sites that say "IF YOU DON'T TAKE THIS SUPPLEMENT YOU ARE SLOWLY STARVING YOUR BODY OF NUTRIENTS AND SETTING YOURSELF UP FOR CANCER!" Anyway, the total tinfoil-hat sites and the ones simply pushing products are generally pretty obvious, but telling the ones based on sound, recent studies from those with a bona fide doctor or nutritionist shelling out not-fully-baked or outdated advice -- not always so easy. I'll ask my doctor, but I'd really like to read up myself and get as much info as possible, provided it's good info. I actually know a nutritionist socially, but frankly, I don't trust her a bit. She's advocated raw milk. She was hugely into the juicing thing (as opposed to eating whole veggies and fruits). She's latched onto a couple of fad food trends and then abandoned them, and yeah... I don't really trust her. I may eventually consult a nutritionist, but if I pay for that, I want to be sure it will actually benefit me to do so and that I am not getting a quack. Actually, that's my problem generally -- I know there's a lot of sketchy, ill-founded dietary advice out there. As a rule, I've avoided it and gone with the tried and true -- lots of veggies and fruits, whole grains, avoid processed foods. But it sounds like this issue, alas, might give me some special needs beyond the average person. I dunno. I'd like to read up on some solid science and well-done studies, and follow the most sensible advice current science can give me. My guess is that I should quit the folic-acid-y multivitamin to be on the safe side, eat an extremely healthy folate-rich diet, and not worry too much. But I saw enough scary stuff out there to make me want to do some reading.
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Post by Deleted on May 16, 2018 18:56:39 GMT -5
Just for fun -- here's a site run by a purported doctor who claims to be an expert on MTHFR mutations, but that I am nonetheless rejecting as tin-foil hat. mthfr.net/absolutely-no-folic-acid-question/2011/10/04/ Why do I reject it as tin-foil hat? This little nifty bit of advice here: Um...yeah. I've apparently got one of the dreadful mutations he mentions, yet I am able to function, and do not seem to be suffering from fatigue or an inability to be "myself." But yeah, I do in fact appear to be present, so... ETA: When I was a kid, my mom was advised by her doctor to go on an extreme low fat diet because she had a cholesterol number over 200. Turns out that her doctor didn't yet know about the whole "good cholesterol" thing. My mom had crazy high good cholesterol, so her total number was no problem--alas, she didn't learn that until years later. I also have an acquaintance on an all-raw-food diet -- she believes cooking makes things toxic. A ton of friends shun dairy or gluten or carbs not for any legitimate medical or ethical reason, but because they believe them to be toxic for everyone. Sooo much crazy and so much bad information out there. And so much flipflopping in pop literature about what is and isn't good for you, with alleged "science" backing it.
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Post by robeiae on May 16, 2018 19:51:07 GMT -5
Yes, as I am sure Opty and ce will confirm, 'tis tinfoil hat nuttery. The guy whose site that is has his doctorate from Bastyr University (full name: John Bastyr College of Naturopathic Medicine). His resume is...interesting: mthfr.net/about/dr-lynch/
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Post by Deleted on May 16, 2018 21:11:59 GMT -5
That. Is. So. Awesome. I'm totally rewriting my resume to resemble his. (I didn't even get as far as his resume -- I rejected the site as soon as I saw the paragraph I quoted, which was totes tinfoil hat, IMO.)
Anyway. Yeah. A lot of kooks and charlatans out there purporting to be "doctors" and "nutritionists."
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Post by Optimus on May 16, 2018 21:27:30 GMT -5
My brain will not allow me to read "MTHFR mutation" as anything other than "motherfucker mutation" in Samuel L. Jackson's voice. This is outside my area of expertise, so my only advice would be to consult an internist or perhaps a dietician. I wouldn't trust a nutritionist, given that being one often doesn't require having a relevant degree, just about anyone can become "certified" as one, and they generally don't know WTF they're talking about. (Edited to add: I found some info that I've posted below that you might find informative/useful). For instance, Ben Goldacre, MD (one of my favorite bad science debunkers) had a public row with "Dr." Gillian McKeith, one of the UK's charlatan nutritionists (to the point that she was eventually banned from calling herself "Dr.") and showed how easy it is to become a "nutritionist" by having his dead cat Hettie certified as one by the same institution that certified McKeith. His dead nutritionist cat even has its own Twitter page now: twitter.com/catnutritionist?lang=enEdited to add: I did find these two articles on the MTHFR mutation on two sites that I very highly trust. They both talk about the quack on the mthfr website you and Rob found and how most of what's said on these sites about MTHFR is total bullshit. The first article is from www.sciencebasedmedicine.com, which is run by pretty well-known and reputable scientists and physicians. They know their stuff and I've always found them to be impeccably well-informed and very reliable. This article goes into detail about why much of the info and scaremongering about the gene that one finds on the internet is mostly complete bullshit: In other words, there's not actually a "one size fits all" treatment for it because there's no real scientific evidence that it's actually harmful in the majority of cases. The scaremongering is coming from alternative medicine frauds and quacks. The other article (also from a site I highly trust) goes into the actual genetic and biochemical mechanisms behind the MTHFR mutation, and also explains that it might not be worth worrying about but there is a simple, non-genetic test (that you'd get from a real doctor) that can determine whether or not you need to do anything about it:
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Post by michaelw on May 16, 2018 21:45:51 GMT -5
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Post by Deleted on May 16, 2018 22:11:01 GMT -5
First off, thank you, Optimus . That's quite helpful and I appreciate it. My diet is actually very high in folate (I eat gobs of legumes and may be one of the few people in the U.S. who actually really does eat 7+ servings of vegetables and fruit on a daily basis) and I seem to be extremely healthy. I'm guessing I have nothing to worry about, but I'll look into the simple folate level test they mention, just to be sure. One friend of mine had celiac disease and didn't discover it until she was 40 (no symptoms that really bothered her) so I know that sometimes you can have harmful conditions without being aware of it, and I'd rather be safe than sorry. But I'll stop fretting about the scaremonger stuff. Secondly, I've been calling it the MutherFucker mutation ever since I found out about it.
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Post by celawson on May 17, 2018 11:10:26 GMT -5
One area in medical school which is woefully underemphasized is nutrition. And even in mainstream medical research, we see 'fads' which seem to be the Holy Grail, and then a few years later they are debunked or suddenly controversial -- see Vitamin D, a low fat diet, calcium supplements, etc. I still don't know if carbs are good or bad! (though I follow the convention that moderation is key, and complex carbs are better) So...that's my way of saying I don't know anything about this mutation. However, I think there are a couple of things you can do to put yourself at more ease here. First of all, there are a few symptoms of folate deficiency that you can pretty easily see if you have -- a pink smooth probably tender tongue, GI symptoms like nausea or abdominal pain after meals (a very non-specific symptom!), ulcers in the mouth, darkening of the skin (the backs of the fingers/toes and creases in the palms or soles). Any of those findings could indicate that something more needs to be done. The tongue findings and the anemia (megaloblastic) associated with folate deficiency are late findings. In the absence of any of these findings, blood tests could be useful here for reassurance. If your levels are fine, then you're obviously not having trouble absorbing enough. Here's a caveat - according to the Medscape article I'm quoting: emedicine.medscape.com/article/200184-overviewI found the article very helpful for the first several sections, then it ran out of steam.
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Post by Deleted on May 17, 2018 11:27:50 GMT -5
Thank you! I'll read it! Sounds like I should certainly have my levels tested, anyway. My doctor doesn't regularly test my blood every time anymore, basically because I am so consistently healthy, my cholesterol is crazy good (my hdl levels are over 100), etc. But, well, I'd feel better getting tested. I am going to tip off my family to get tested, too -- their diets and habits are not nearly as healthy as mine, so if they share this mutation, it might be a bigger deal. I must confess it doubly concerned me in light of my dad's illness and his rapid downward spiral. He also smoked and his diet was totally not in a league with mine (I got diet-conscious when I started running). I can't help but wonder, in light of the possible links to dementia, whether this mutation, in combination with his smoking, contributed to his illness. As far as I know, we have absolutely no other cases of dementia in the family, and lots of my relatives have lived to ripe old ages. (Fun genetic fact-- I carry double copies of good alleles for a pile of genes linked to extreme longevity, including the good alleles for the Fox03 and SIRT1 genes, (like this , this , and this, for example, for you nerd types ) plus genes that correspond with my insanely good HDL levels. I've been reading up on that, too. These genes may help explain why we have an outsized number of centenarians in the family. It may be that my poor dear dad got the short end of the genetic stick.) Anyway. Thank you celawson and Optimus . I now at least have a start on some rational guidance on this mutation. (And yes, I AM really nerding out over my DNA report. But that's how I roll.)
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Post by Deleted on May 18, 2018 7:43:03 GMT -5
I'm getting much too interested in my nerding, quite beyond the way my DNA may effect me. Too late for me to go back to school to study this? There are a fair number of non-tinfoil-hat-looking articles/studies out there discussing how the U.S.'s fortification of nearly everything with folic acid has been a good thing for babies, but may have a devastating unintended effect on the elderly. E.g, now.tufts.edu/articles/folic-acid-too-much-good-thingSee also this one: www.ucdmc.ucdavis.edu/medicalcenter/features/2009-2010/01/20100121_folic-acid_elderly.htmlMy mom is among those who think fortified processed foods and supplements are just as good as whole food, and the more, the better. I think this is actually a pretty common belief. And it just might be a dangerous one -- especially if a gene mutation, illness or age has made your body less able (or perhaps overly able) to absorb certain nutrients. I must say, when I've looked at the array of cereals, energy beverages, supplements, snack bars, etc. etc. that all contain 100% or more of the recommended daily allowance of a ton of vitamins and minerals, I've wondered about whether that could really be a good thing for people who eat lots of them.
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Post by Optimus on May 18, 2018 17:10:24 GMT -5
Eh, they're overstating the risks. But, they often do that in nutritional research (which is generally a dumpster fire of sketchy correlations, piss-poor analyses, and catastrophized conclusions). It's definitely something to be aware of, but there are things that have a far greater impact on one's risk of cognitive decline than the slight chance that a person has a gene variant that makes them more susceptible to B12 deficiency.
Family history of degenerative impairment and lack of physical activity are arguably far more important to age-related cognitive decline than levels of folic acid in bread and vitamins.
On a side note, multivitamins are a waste of money for most people anyway.
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Post by Deleted on May 18, 2018 17:43:06 GMT -5
Yeah, I do always take that stuff with a certain amount of salt. There have been a lot of warnings, etc., that turned out to be overstated. That said, I am a bit skeptical of the sheer number of processed foods we're packing with 100% of every nutrient, generally eaten in vast quantities by people who also take supplements. My mom probably eats three or four packaged things a day that are fortified, plus a pile of supplements. I dunno, that just seems like a poor idea to me (not that she listens).
I've always taken a multi to be "on the safe side", but the more I read, the more I think I should ditch it. I may need vitamin D, especially in the winter (living in New York and being a sunscreen user who is often indoors during peak sun hours anyway). But the rest of it...meh, I'm guessing I don't.
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Post by Optimus on May 18, 2018 17:47:25 GMT -5
The dubious validity of most nutritional studies, summed up in one pic:
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Post by Deleted on May 18, 2018 18:08:36 GMT -5
Ha!
Yeah, I've never really latched onto any of the "give up eggs or you will DIIEE!" bandwagons. And I love all the people who tell me how terrible dairy is when I routinely eat 3-4 servings of full-fat dairy and have exactly zero of the dire problems they threaten. The only things I try to consciously limit are sugar and heavily processed stuff (I still eat it. Just not lots of it).
The mutation thing did make me stop and think, though. It would suck to blow my whole "live until 120 and run a marathon on my 100th birthday" plan just because I didn't get enough folate.
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Post by Optimus on May 18, 2018 18:13:53 GMT -5
Currently debating whether this should be my new sig line.
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