Monday, January 7, 2013

What's Missing From Folic Acid Awareness Week

As I got on Facebook yesterday and scrolled down my newsfeed, something caught my attention. Somebody posted that Folic Acid Awareness Week is January 6-12 this year. They posted some information from the National Counsel on Folic Acid. I went onto the NCFA website and started reading some things, and the site talked about supplementing folic acid, and eating folic acid fortified foods (like cereal, pasta, bread, etc.) to get enough folic acid and prevent neural tube defects. It seems like a great website, and a great cause. And I mean, it sort of is, don't get me wrong - the research clearly shows that supplementing folic acid has reduced neutral tube defects by a significant percentage... but at the same time, I took the recommended 800mcg of folic acid my entire adult life religiously, every. single. night. I ate TONS of "fortified" cereal, bread, and pasta from the time I was a small child, into adulthood (and unfortunately, I'm sure it's part of what helped me pack on the pounds I'm fighting to lose now). I should have had plenty of folic acid in my system, and that would mean that I should never have had a child with a neural tube defect...right? Except I have a gene mutation, a compound, heterozygous MTHFR (aka, Methylenetetrahydrofolate Reductase) gene mutation to be exact. I could take hours to try to explain all that I've learned about what this means in regards to your health, pregnancies, etc., but I will try to keep it simple and to the point - this post is about MTHFR and folic acid.
In a nutshell, this gene mutation affects the way our body absorbs and uses B vitamins. "Folic acid" is the synthetic version of the vitamin folate (B9). Folate is required by our bodies to make and create cells. It helps make DNA, RNA, amino acids, and even red blood cells. It is vitally important in pregnancy to help ensure proper and adequate growth of the baby, and a deficiency of this vitamin can lead to birth defects, including neural tube defects like spina bifida and anencephaly (which is what Eden had). Unless there is a compelling reason that has caused a person to do otherwise, most people take synthetic folic acid, either in tablet form, or through their fortified foods. It's what is normalized in our society through the media and medical community. 

But our cells and bodies can not use folic acid. Folic acid must be converted into what's called methylfolate, through a 4-step process called methylation. This process requires a specific enzyme created by the MTHFR gene, and when these genes are mutated, you end up with a defective enzyme that can not convert folic acid into methylfolate. This may not seem like too big of a deal, because not many people have had or know someone who has had a child with a neural tube defect. At first glance, one might think this mutation is rare, but unfortunately, it isn't rare. It's actually a very common mutation - more common than you might think. Although people are not regularly tested for this (and I wholeheartedly believe they should be), a MTHFR gene mutation is found in over 50% of the population! That means over half the people taking folic acid are not receiving the full benefits of it! While a MTHFR gene mutation is not a guarantee that you are going to have a child with a NTD, it is very likely it is affecting your life in some way. A MTHFR gene mutation can cause a large number of diseases and symptoms because the B vitamins pathways are not functioning properly. Just a few of these symptoms include miscarriages, Placental Abruption, blood clots, stroke, asthma, Down Syndrome, midline defects (tongue ties, lip ties, belly button hernias, etc.), and the list goes on.

So if folic acid is as good as useless for so many people, how can we prevent things like neural tube defects? Unfortunately, it is very common for doctors to recommend mega-doses of synthetic folic acid to those who've had a NTD or who have known MTHFR gene mutations, but scientific evidence is showing there are consequences of taking high doses of this synthetic vitamin. Folic acid may not be the right choice for anyone. There are many studies that have come out in recent years linking synthetic folic acid intake to breast cancer, prostate cancer, asthma, and much more, but it's important to understand that naturally occurring folate does not increase the risk for these things.

Fortunately, there are a couple ways to get the folate that our bodies can use. The best (and more obvious) way to get enough folate is by eating foods naturally rich in folate. These are not the fortified foods that have added folic acid, but instead foods like dark leafy greens (like spinach, collard greens, turnip greens), broccoli, asparagus, lentils and other beans, seeds and nuts, liver, etc. A quick google search will give you lists upon lists of foods naturally high in folate (please note that the term "folic acid" is so normalized, that it's often used interchangeably with folate, but a good rule of thumb is if it is a whole food containing folate, then it's naturally sourced, but if it's a processed food, it is synthetic folic acid). 

The second way you can get folate is by taking a methylfolate supplement. These supplements are already the converted bio-available form our body can use, and so they bypass the entire methylation process. I'm not a doctor, and I can not give medical advice, however 800mcg is the commonly recommended dosage of methylfolate for women of childbearing age, and 1000mcg is the commonly used dosage of methyl-B12. Methyl-B12 is the bio-available form of the B12 vitamin (as opposed to the synthetic form, cyanocobalamin). The methyl-B12 is important because it aids in the absorption of the methylfolate. Obviously diet is the best way to get any vitamin, but if supplementation is necessary, these are the best forms of these B vitamins that our bodies can use, with the least amount of risk. It's best to talk to an informed doctor and have your B vitamin levels tested to get a customized plan for supplementation.

Although Folic Acid Awareness Week is directed at a valid concern for women who are trying to conceive or pregnant, raising awareness about real, food-sourced, and active forms of folate and the related genetic conditions should be an integral part of this week. We should be taught that for those with healthy folate levels and no genetic concerns, continuing to get vitamins from fresh, whole foods is smart. For those with low levels and/or those who have genetic concerns, it's important to research the bio-available forms of nutritional supplements (such as the methylfolate and methyl-B12). These active forms bypass the methylation process, and a person, especially those with a MTHFR mutation, can benefit greatly from taking these supplements instead of folic acid.

I will leave you with some resources that I've found helpful in my research, so if you choose, you can start down your own path of discovery. 

Dr. Ben's site*:
MTHFR Support*:
More on Folic Acid: 

*Be sure to go to the "Resources" page on each of these websites, because they lead to even more helpful resources - otherwise I'd be listing links all day.


  1. First, I want to say I'm really sorry for your loss and I can only imagine the heartache you feel on a daily basis. Your baby will never be forgotten.
    Three years ago a friend and I found out we were pregnant around the same time and were due just days apart. It was really exciting! But in the first trimester my friend found out her baby was going to be born with a NTD. At their first ultrasound they found out they were having a boy (they had 4 girls between the two of them), so they were ecstatic, but their joy turned to sorrow when they learn that the NTD was anencephaly. She wanted to keep her pregnancy to term or as long as possible and even hoped to bless another family by donating his organs if they were viable. Unfortunately, due to her own health issues she needed to deliver a month early and there were not able to do that. I will never forget her little boy, Dillon Michael Hodge!
    I am the one who posted about Folic Acid Awareness Week. On my birthday in September, I made a goal to spread awareness for causes that are close to my friend's hearts; any cause they had, I wanted to help. The importance of getting enough folic acid (folate) to prevent birth defects was the cause my friend asked me to help spread awareness about.
    To be honest, I had not done any research and I didn't even know where to start. I didn't know about the difference between folic acid and folate. And like you said they tend to be used interchangeably so I Googled folic acid awareness. Again, I didn't know what I was looking for so I went with the National Council on Folic Acid and saw they have a week dedicated to spreading awareness. I thought it sounded like a good place to start and began posting that information to a bunch of Facebook groups I'm a part of (I joined the anencephaly hats group because of this cause). And I am so glad that I did make an effort to spread awareness (even though I didn't know much about folate and folic acid) because it has taught me more about the differences and needs. And through my post, you have shared your story and your research, which in turn I have been sharing. Ultimately, even though I have not done the extensive research, you have and that has definitely helped me spread awareness, which means your baby and my friend's baby really will help other mothers and their (future) babies. To me, that is a huge blessing to be able to share and hopefully make a difference in someone's life.
    Thank you so much again for taking the time to share your story and your research. Your baby girl is a beautiful gift from God and I will definitely take your story to heart!

  2. I find this fascinating as they keep wanting to fortify our bread/cereal in NZ an exercise that would be fruitless for a significant portion of the population. Thanks for sharing :)

  3. I think this is a great post. MTHFR and other mutations and autoimmune conditions definitely impact nor only *our* bodies, but our children. We have Celiac, but it was undiagnosed through our first two pregnancies. Both babies had heart defects linked with B vitamin deficiencies, but I was eating B-complex like candy. No one thought to look at WHY I was not taking in the B's and then, once I was diagnosed after many "crashes", I found out Celiacs have a very difficult time with B absorption. Imagine that. Our third baby - gluten free and with a very altered diet on top of that - no heart defect, among other much-improved things for both the baby and myself. I have read Eden's story before, and it breaks my heart. I applaud you for continuing to share. <3

  4. You know, Heather, in my MTHFR research, I found that gluten sensitivity and Celiac disease are more prevalent in those with the MTHFR gene mutations, likely due to the mal-absorption of the B vitamins and the resulting hyperhomocysteinemia. I've cut wheat out in our family for a couple weeks now, and I can already see a difference in myself (even though I don't even have hyperhomocysteinemia). I've long suspected a wheat sensitivity, but didn't want to "give it up".

    On a related note, 98% of those with autism have a MTHFR gene mutation, and many people are realizing diet changes can show drastic changes in the person's behavior.

    It makes a person truly wonder why this mutation isn't researched and taken more seriously when there is study after study showing how the mutations can affect our lives.

  5. Oh, my goodness, how interesting this all is! Thank you for sharing this information. I agree with you that this mutation needs to be taken more seriously. I had no idea about any of this this yet I have had friends or co-workers who have suffered some of the problems you listed and now wonder if they have this gene mutation and are just unaware. How did you discover you had this mutation? Was it after the birth of Eden and the loss of her and your search for answers or did your doctor suspect something that led you down this path of discovery? Either way, I want to thank you again for sharing this information as I will pass it along to some people I think it may help.

    1. Hi Jan, I found out about my gene mutation shortly after we found out about Eden's anencephaly. The specialist I went to for the second "confirmation" ultrasound ordered the blood test. I had no idea what the blood test was even for at the time - I learned everything I know now after getting the results back and doing my own research on what it meant for my health.

  6. I love this blog post. I am always looking for new ways to explain Folic Acid vs Folate to people. Do you mind if I share this on the MTHFR Support Facebook page, and on my blog? I would appreciate it! Thanks for posting the link to I have the "Pregnancy" page. We appreciate the advertising :)

    1. Sure you can share it on your FB page and your blog - for your blog, just make sure to put a small part of it, and link back to my blog for them to read the rest. The more "duplicate information" search engines find, the lower both posts will show up on search results. =) I found your guys' page very helpful in my research!

    2. Is this ok? I can change the title.

  7. I can't believe I found your post!! I happened to notice a link to your page from my friend's page for Naomi Grace. My son and I were diagnosed with MTHFR this past August, it explained so much. And I agree with you 100% -- EVERY person should be checked for this gene. They do so many vaccinations and other things at birth, I think the blood test for this gene should be routine.
    I am so sorry for your loss. Thank you for donating your milk, sharing your story, and for taking the time to write about MTHFR.

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