The day after my little guy was born, I was sitting on the couch trying to improve his latch and in my oxytocin-induced la la land thought, ‘hmm I ate well with him, took a food-derived prenatal, and had good nutrition prior to conception. Why does he seem to have a slight tongue tie (midline defect)?’
A fellow GAPS mom later told me about the differences between folate and folic acid, and how using the wrong form of the vitamin B9 (folate) can cause midline defects including tongue tie, sacral dimple, and may be causing some sensory integration disorders, and more.
I wasn’t overly concerned because this baby is developing completely on track, has a great immune system, and is growing as expected. The tongue tie prevented him from ever having a *great* latch, but we figured out nursing positions that help, and he’s been able to get plenty and I don’t have pain.
A few months later another GAPS mom (her blog is here) emailed me explaining how important folate and the B vitamins are for ‘families that have leaky gut (read more)‘ and recommended this multivitamin by seeking health that contained folate rather than folic acid. I tried it and was immediately thrilled with the extra energy (I posted about that back here).
When energy is boosted from a supplement, it usually means that a particular nutrient was missing from our diet, or was present in an unusable form. In this case, that was folate.
Why folate and not folic acid?
Folic acid is an inexpensive synthetic version of the water-soluble B9 (folate). Some people possess the enzymes needed to get folic acid to do what natural folate does in the body. Some people can turn folic acid into folate at a much reduced rate (source), which puts them at a deficiency even though they are consuming a significant amount of folic acid. The deficiency may not be low enough to cause neural tube defects, but it may present in other ways such as growth trouble, tongue tie, and neurological problems.
Even when people can digest folic acid, there are new studies coming out showing that over consumption of the form folic acid (not natural folate) can actually turn off the ability to absorb it- even if these people do not have the MTHFR gene mutation. (source)
Why is folic acid in so many foods?
In 1998 in the US it was mandated that grains be fortified with folic acid to help prevent neural tube defects (spina bifida is the most commonly known). Even people with the MTHFR gene mutation can metabolize some of the folic acid, and since the standard american diet is so deficient in dark leafy greens, liver, and other foods that contain natural folate, this was an improvement and did reduce the risk of neural tube defects in unborn children (source).
Read: Is your Gluten Problem Really a Folic Acid Problem?
See all MTHFR/Folic Acid Articles
What does MTHFR have to do with this?
When we have the MTHFR gene mutation, either in one gene or both, we experience a loss of the enzyme in the liver needed to turn folic acid into folate for the body to use.
Folate, vitamin B9, is used in the body for many things including detoxification, growth, energy, muscle building, brain function, and more (source).
A heart shaped tongue can be the sign of a tongue tie. (and I KNOW! I die of cuteness every day with this boy too!)
What does this have to do with tongue ties?
Tongue tie is a midline defect. I know, it’s hard to talk about our children (or ourselves) having a defects. But down the center of the body seems to be where many nutritional deficiencies show up. This can be anything from a cleft lip, to tongue tie, to spina bifida, to neurlogical problems.
Midline defects are what Weston A Price looked at primarily in his work and the book Nutrition and Physical Degeneration.
For more information on lip and tongue ties, Mommypotamus talks about them, and how they impact the nursing relationship, here.
How could this be part of the increase in autism spectrum disorders?
Studies have shown that folic acid (source, source) supplementation may lower the risk of autism. When the family has the MTHFR gene mutation, they are unable to process folic acid and the baby is getting a much reduced amount of folate.
Surprisingly, many babies enjoy liver! I offer organic free range chicken and beef liver, cooked and salted with sea salt as a first food.
What foods naturally have folate in them?
Folate is present in foods – this is great news! We’re not dependent on a supplement (I tend to be skeptical of people who claim that we need to be) if we’re consuming these foods regularly. (these are some of the foods that contain high amounts of folate)
Some daily folate recommendations: (source)
- 6-12 mo: 65 mcg
- 4-8 years: 200 mcg
- Adult women: 400 mcg
- Adult women, pregnant: 600 mcg
Amount of folate per 100 g as per nutritiondata.self.com
- Seaweed, agar – 1010 mcg
- Leeks – 366 mcg
- Sweet green peppers – 229 mcg
- Spinach, raw, 194 mcg
- Sunflower seed kernals, toasted, 238 mcg
- Duck liver – 738 mcg
- Chicken liver – 588 mcg
- Beef liver – 290 mcg
Why is folic acid so bad?
Folic acid is bad for people who can’t process it because it ‘plugs’ the receptors on cells that need real folate, causing the body to not be able to access the real folate that does come in through your diet.
This is especially hard because folic acid is added to so many foods. It’s not a matter of only consuming enough real folate, but for those with the MTHFR gene mutation, they also need to avoid folic acid in order to make sure their body can access the folate it needs.
How would GAPS help this?
When we start the Gut and Psychology Syndrome diet (read more about the gut-healing protocol (GAPS) that helps with neurological and digestive problems here), we are encouraged to stop all supplements,so we wouldn’t be getting folic acid that way. We also don’t consume processed food, which is often fortified with folic acid, so it’s not in our diet there either. We eat leafy greens and liver, which are high in natural folate.
These supplements contain folate that is more easily absorbed than the cheaper folic acid
Recommended Folate and Multivitamin Supplements:
Amazon is out of the multivitamin that I started with, so last time I ordered these two instead. I’m using Active B12 for the kids and L-5-MTHF for me, which gets passed to my breastfeeding baby as well.
Seeking Health has a Optimal Prenatal with easily absorbed folate, that ideally you would start taking prior to conception.
Seeking Health also has a chewable Prenatal, witch can be easier to swallow with morning sickness
There now are gummy vitamins for kids with methylated Bs: Smarty Pants brand (see here)
I also use a multivitamin for my family that uses mythlated Bs. You can see more about that here.
I had a couple moms tell me about prenatals that contain folate rather than folic acid: Garden of Life Baby and Me (this one also contains red raspberry leaf, which I do not use in early pregnancy due to cramping).
“I don’t believe in this, I believe in XYZ”
That kind of statement comes just about any time chronic health conditions, including autism, are mentioned. That’s okay, you don’t have to believe me.
This post is for parents who are interested in learning more about folic acid and how it possibly could be tied to autism. I’m not judging how you feed your family or what supplements you take, we’re all at different places and all have different priorities and that doesn’t make either of us wrong. It seems that the more I learn, the more I’m sure I know very very little about autism and health in general. I’m still going to keep reading, trying, and sharing what works for us and what doesn’t.
Ack! I’m pregnant! And I’ve been taking a prenatal vitamin with folic acid!
I know, there’s so much to think about when you’re pregnant, isn’t there? I recommend checking with your care provider and see if a multivitamin containing folate rather than folic acid is acceptable to them. Obligatory reminder: I am a mom, not a healthcare professional. I write about what I do with my own family, but I am absolutely unqualified to offer any medical or nutritional advice. Please seek the assistance of a qualified professional.
If you liked this you will love my new e-book, The Empowered Mother, where I raise questions like this (we also talk about where to get the most absorbable iron if you need to supplement that, as well as hundreds of other topics like this).
Even if you don’t want to buy the e-book, I feel this information is so important to get out that I’ve made my resource page public here. You can go through week-by-week (the page is currently in progress) and check out the different sources I’ve used and use them to ask different questions and research further. Click here for The Empowered Mother!
Want to learn more?
- Chris Kresser talks about folate vs folic acid and describes the metabolism differences here.
- You can now get genetic testing at home. See more here.
- Dr. Lynch has tons of information that I’m just getting started on reading, but I can’t wait to read more. Start here.
- The MTHFR-Autism Connection.
- Yes to multivitamins! (even if you have a healthy diet)
- We need to choose our vitamins carefully!
- Folic acid is hiding- here’s where.
More on pregnancy and babies
- 3 Decisions made during labor that affect your recovery time and your baby’s health
- 3 Unexpected causes of diaper rash
- Introducing solids to babies that you suspect have food allergies
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My husband has this gene mutation (he got blood work done) There are 6 siblings and they all have the mutation. His older brother and older sister both have kids who are on the spectrum. Do you know if giving kids who have been diagnosed with autism benefit from taking the active form of B12. I do not believe that the kids have been tested for the mutation. Thank you!
Mine did, we did methyl-b12 injections for a while but now she just takes the one listed above.
Thank you I’m going to pass this information on to my husband.
I’m just seeing this article.. I took orebatals and extra folic acid per my doctors request. My Gunnar developed autism after we gave him Tylenol for a dislocated elbow. We have him on the b12 shots. How long did you ha e your daughter on the shots and what made you stop them? I am trying to do everything right to bring my Gunnar back. He and my 3 yr old son Ryker both only have 48% function of the mthfr enzyme. We feel like Gunnar isn’t improving as he should. We have both boys on a GFCF diet. Ryker has ADHD combined.. I feel so guilty cause I gave my children these conditions by taking the wrong supplements as well as fully vaccinating Ryker and giving Gunnar the doctor recommended dose of Tylenol.
Hello Nichole,
There are a number of aspects of the methylation cycle which can help autistic children. I have not used them in my practice but read a good deal about them as I study MTHFR and methylation for other health issues.
Blessings,
Eric Potter MD
Sanctuary Medical Care and Consulting
Serving Northeast and Middle Tennessee with Biblically Wholistic Healthcare
Note: none of this should be taken as medical advice, just general information on the subject.
The midline forms around week 6-8, many women don’t even know they’re pregnant at that point. It’s important to take prenatal vitamins prior to getting pregnant! Innate Response Baby & Me is a natural form of folate.
True!!! I began taking CHEWABLE prenatals 6 MONTHS before the date I planned to get pregnant. My family planning was sort of….exacting simply because of the military life we live. I began the prenatals like that to hopefully avoid the children having issues like I ended up finding out I had. I didn’t really work. All 3 have EDS, middle has chiari like I do…..it was, I don’t want to imagine what it would have been like if I HADN’T taken that precaution. That’s for sure.
Thank you for posting this. I am still learning about the mutation. We haven’t been tested but I am guessing my husband and/or I have the mutation. We have one child- 13 months old son that has a lip tie, multiple food allergies, gi troubles and possibly some sensory issues. He has been on GAPS for two months and is doing so much better! I think he may be on the spectrum. He is getting evaluated at the end of this month. His symptoms are very mild at this point. I think it is due to being on GAPS at such an early stage (thank goodness!). Anyways, I am wondering if you would give the Active B12 to a 13 month old?
Hi Maria, what a good mom for being so proactive! Yes, I would give active B12 to a 13-month old, though I’m not a doctor and this isn’t medical advice. :)
Thank you! I just received mine. I wonder if this needs to be started slow and then worked up to 1 tablet?
That’s what I’m doing with the B12/folate. With just the folate I started at one capsule and now am taking 4 (what I needed to see results).
My pediatrician specializes in kids on the spectrum and she did put my son on a methyl B 12 W/folate at around a year old. Also, a chewable. CoQ10. We had already started GAPS and were taking Cod Liver oil, if we hadn’t been, she would’ve prescribed that as well.
A friend just mentioned to me that her doula thinks she’s seeing a pattern of tongue tie in babies whose mothers took anti nausea drugs in pregnancy (Zofran, maybe?) I wonder how those meds work in the body? Maybe interference with detox pathways/methylation or the body’s ability to absorb folate?
They could, I have read that antiacids can inhibit the absorption of folate as well.
Interesting! I did not take any anti nausea medications. But did have my share of Tums at the end of my pregnancy.
Me too, with my first. There are so many things I regret with my first pregnancy! With my last two I realized that too many carbs/sugar caused the reflux. I didn’t need to be low carb or anything, just make sure I wasn’t eating meals that were mostly carbs.
Oh dear. I’ve taken medication for hyperemesis gravidarum (not long as they didn’t work…but still), I have the MTHFR mutation and so does my husband. Our daughter has autism (and severe allergies).
I’ve read that morning sickness is caused by deficiencies in B vitamins in the first place (as well as magnesium). Why didn’t I know all these things back then… and why didn’t the doctors mention this at all?!
And yes I’ve also been taking folic acid religiously (they actually increased my dosage following my stay in hospital for severe dehydration from vomiting). Feeling a bit (more) lost now.
By the way our daughter takes a multivitamin for kids on the spectrum that has folic acid in it… shouldn’t that be taken out?!
It might be more correlation than causation (although maybe not). I have a strong suspicion that MTHFR mutations and the accompanying nutrient processing problems contribute to severe nausea during pregnancy, so it may be that those who are prone to have babies with midline defects are also prone to taking anti-nausea meds.
From my knowledge, nausea in pregnancy is common with MTHFR mutations, especially if taking a prenatal with folic acid. Perhaps these mothers are more likely to have nausea so severe to need Zofran.
I have had SEVERE HG in all of my pregnancies, yet I NEVER took any meds of any kind at all for any of my pregnancies and ALL of my babies have had differing degrees of lip & tongue ties.
I too had a lip tie (it ripped from a fall or something as a kid), but I still have a tongue tie. I also had a cleft lip & palate at birth, but later found out it was due to a water contamination at the military base where we lived before I was conceived & when my mother was pregnant with me. The over 80 known solvents & toxins in the water are multi-generational & can impact 3 generations. Makes me wonder if THAT is the reason for the lip & tongue ties for all of us… if that caused a potential MTHFR mutation… or if I already had a potential MTHFR mutation…
Instead of multi-vitamins, my family has chosen to add Juice Plus. It’s whole food nutrition in capsule or chewable form. It has folate in it due to the whole foods used and many Drs are now recommending moms use JP instead of prenatals. I’d love to share more with you if you’re interested. I love reading your articles and blog. I have learned a lot of very healthy & helpful info from you. I have celiac disease and am on a gluten free diet and I also have a son who has Type 1 diabetes. Juice Plus and maintaining a healthy lifestyle has helped our immune systems and overall general health! Thank you for all you do to help educate people to maintain a healthy and safe lifestyle!
I hear good things about juice plus, but for nearly $50/month, you’re only getting 15% of the recommended daily amount of folate.
Also, Juice Plus has folic acid in it.
Hi Jill and Cara. I have to agree with Julie that I am also a big fan of Juice Plus+. But I am also a big fan of whole food nutrition and the amazing way it can help the body! So whether someone can get their daily amount of natural folate through whole foods or through both whole foods and whole food nutrition like Juice Plus+, more power to them! I just wanted to make sure the correct facts were out there for JP. The company became aware of the MTHFR issue and made sure that any added folate would not be in the form of folic acid, but folate already found in the fruits, vegetables and berries that they use. They have transitioned all of their products over and now are simply changing out the labeling. Also, according to the current label, you are actually getting 105% of the RDA for folate as opposed to the 15% that was stated, and that is just for the Orchard and Garden blends, if you add the Vineyard blends there is even more benefit. Hope this helps! And here’s to healthy mama’s and babies!
My midwives used to sell Juice Plus, but many of their mamas couldn’t afford it. They said their recommendation then was Vitamin Code Raw Prenatal (which they also sold) & that it was very close to JP, but cheaper. I checked the label on VCRP & it has FOLATE not folic acid & it also has a preferred for of vitamin b (methyl..something).
As I recall, Juice Plus used to have folic acid as one of the ingredients. Has it been replaced with folate?
Last time I checked it was folic acid and not recommended
Juice Plus does not contain synthetic folic acid but does contain naturally occurring folate found in fruits and vegetables. The Garden blend contains 55% and the Orchard blend contains 24% of your daily requirements of folate. Many people with MTHFR have had great success using Juice Plus in their daily diet. At $44.50 a month for an adult a child can get theirs for free. I know many doctors who also recommend it as a prenatal instead of isolated vitamins.
Can you link to the new ingredient list? When I wrote this article they were still using folic acid.
As of today – September 2016, Juice Plus DOES still contain Folic Acid and it is not the methyl-form. I love Juice Plus and it has really helped my health. I have not been tested for any MTHFR mutations, but I have suspected for a long time now that we are experiencing the effects of some of these mutations in our family. Most recently, I am realizing that my 10 y.o. is most likely struggling with sensory processing disorders. All that to say, I have done SO much reading an this topic. I love JP and I love how it has helped our family, but I am still concerned about this folic acid issue and whether or not it could be causing more harm than good. On a side note…I kind of don’t want to know about the MTHFR, only because I am afraid I will find out more than I want to know.
I just wanted to mention, you can do everything “right” and still have a tongue tied baby- for all of those worrying. I have not been tested for this gene mutation… But, my 5.5 month daughter was tongue and lip tied. I have not taken a single prescription or over the counter pill in over 5 years. My prenatal was a food based vitamin, so no synthetics. I eat an only organic varied diet, I juice. I had a great pregnancy with very mild morning sickness… I could, or my husband could have that gene, but, sometimes no matter what you do, things can happen. Personally, I think the best things we can do- eat real food and avoid chemicals/synthetics in all forms…
I agree with you! I took a food based prenatal too, or at least I thought I was, it had added folic acid in it though :( which one did you take? I don’t doubt that you can do everything ‘right’ and still have a baby with a tongue tie.
I did everything “right” and I have a baby with a tooth enamel defect which causes his enamel to just start disappearing shortly after a tooth comes through the gum, and a cavity starts forming shortly afterwards on the unprotected tooth. I ate an all organic, Weston A Price diet, preconception and through my pregnancy, took Garden of Life prenatal, ate liver weekly, home made kefir, raw milk, locally raised grass fed meat, eggs from my own organic chickens, natural cleaning products and skincare, ETC, I was very meticulous about everything. He was born at home with no drugs, I didnt take a single prescription or OTC drug preconception, pregnancy, or while breastfeeding. He never has had sugar or junk food, yet has a mouth full of decaying teeth. I then look at my friends who had c-sections (increases the risk of child having cavities due to gut flora imbalance), ate junk food through their pregnancies, formula fed their babies, started them on junk food and pop at 6 months. They’re now the same age as my 18 month old son and their parents choices have not caught up to them yet, and the friends look at me like “see, your silly diet and natural everything makes no difference!” Anyway, it is frustrating to know how hard you tried, how good you thought you did, only to have something like this happen anyway. It’s in our genetics, partially, I believe. There is some stuff on this on the Weston A Price website about bad diet and lifestyle choices of even one generation, but especially several, influencing the health of generations to come (so in otherwords, what my parents and grandparents ate and were exposed to could be the cause of my sons enamel defect), so there’s more to it beyond just what you ate while you were pregnant. There have also been recent studies showing that the fathers folate levels matter as well at the time of conception.
Just so you know, your son’s tooth enamel defects may be just in the baby teeth and not carry over to adulthood. My brother had baby teeth so fragile they were worn down to nubs by the time he lost them. Yet he’s never had a single cavity in his adult teeth and he’s over 50 years old now! So there’s hope that he’ll ‘grow out of it’ and have strong healthy teeth.
I agree on the father’s folate levels and their role in the genetics. Both my kids have upper lip ties that go through the gap between their front teeth. I don’t have this and no one on my side of the family does, but I have a slight tongue tie and my kids have the slight tongue tie also. I have read that the gut microbe does affect genes and can turn on and off certain genes, so if the dad’s gut is bad, and certain genes have been turned on in him, it will be passed onto the children. So, with that said, dad’s need to eat healthy also prior to conception. It’s not all just about the mom which seems to be who doctors just look at when it comes to babies health.
I know how you feel, I have had similar sentiments over the years!
I wish to order your book. I do not use pay pal I go and get money orders. So please let me know how am I to pay for this book. My daughter is pregnant with her first child and this book would be great to own. Please let me know what I need to do. A new grandmom in Feb./March 2015.
this multivitamin is great and has folate instead of folic acid. http://www.pureencapsulations.com/products/nutrient-950-with-vitamin-k.html
I took it throughout my pregnancy and my daughter was born with a TT/LT. Hoping that doesn’t happen with #2!
While it may have folate it is VERY expensive & it has VERY LITTLE D3 in it. My midwives & docs all say to take a minimum of 5,000-10,000 IUs of D3 when pregnant and or nursing. It also has A LOT of SYNTHETICS in it (various forms of vitamin k for starters that are synthetic) as well as being made my Merck :(.
The information on folate vs folic acid is actually the other way around. Folic acid is the natural form and folate is the synthetic form (https://en.wikipedia.org/wiki/Folic_acid)
The idea that folate and folic acid are different molecules is also inaccurate. The difference between the two is that folic acid has a hydrogen atom associated with the molecule in the form of an “ion”. Ions move away from their parent molecules once dissolved in water, therefore once dissolved, folate and folic acid are exactly the same molecule.
I welcome constructive criticism like this, I’m wary of promoting supplements and I want to make sure I’m not promoting something that isn’t necessary.
From what I can tell, when supplements say they contain folate (folic acid) it is synthetic. What I refer to as natural folate above is naturally found in food.
Ok, so far I’ve found this comparing the two molecules: http://seqcore.brcf.med.umich.edu/mcb500/folsyl/folmetab_files/image003.png
This study shows that folic acid (synthetic) added to food is not processing in the body (from what I can tell – it’s been a while since I took chemistry and I haven’t used it in a while) http://www.ncbi.nlm.nih.gov/pubmed/17617936
I believe it’s the enzyme dihydrofolate that allows synthetic folate to be processed through the rest of the cycle, and this is what is missing in people with the MTHFR gene mutation.
Hello Cara,
Yes the enzyme DHFR (dihydrofolate reductase) is necessary to convert folate into a form usable by the methylation cycle. It is slow and easily saturated, meaning that a high dose of folic acid will sit there waiting in line to be processed (as it is filtered out by the kidneys). It will hinder the function of folate transporters and elevated levels can interfere with white blood cell function. Methyl-folate bypasses this step downstream, providing the nutrient which is used directly (after absorption and transport to cells) by Methionine Synthase (MTR) to feed into the methylation cycle to produce SAMe which is the primary goal of the cycle.
I hope this information helps.
Blessings,
Eric Potter MD
Sanctuary Medical Care and Consulting
Serving Northeast and Middle Tennessee with Biblically Wholistic Healthcare
Note: none of this should be taken as medical advice, just general information on the subject.
In my own experience, I need to take methylfolate and methylcobalamin to become pregnant and for that pregnancy to progress. I am C677T Homozygous, which means I have a 70% loss of methylfolate. Because of MTHFR, I am greatly impaired in my ability to convert folate into methyl folate. So for me folate is not enough. And I have to supplement. There is no way I could eat enough folate rich food to correct this mutation.
There are 7 common mutations and more than 50 total that have been identified at this time. These are some of those common mutations: COMT and MAO A; CBS; MRT/MTRR; GSTM1; SOD; GAD; HNMT; QDPR; NOS; and SUOX.
Heterozygous = 1 copy
Homozygous = 2 copies
MTHFR C677T or 677CT Heterozygous have 40% loss of methylfolate
MTHFR C677T or 677TT Homozygous have 70% loss of methylfolate * Me / Yikes!
MTHFR A1298C or 1298AC Heterozygous have no loss
MTHFR A1298C or 1298CC Homozygous have slightly decreased DNA methylation
MTHFR C677T & MTHFR A1298 Compound Heterozygous = 50% loss of methylfolate
C677T was discovered in 1995 and A1298C was found in 2001.
You need methylation for basically everything. (DNA, RNA, Proteins, Lipids) If you are not at an optimal level you will get sick. Methylation is absolutely critical during pregnancy (gene regulation). It processes hormones like estrogen, fights an infection, and methylation also produces energy (CoQ10, carnitine, creatine, ATP).
45% of the population has 1 copy of 677T (heterozygous)……..and 12% are homozygous (2 copies) for the MTHFR mutation like me.
I was born tongue tied. It is also very hard for people with this mutation to rid toxins from our bodies, especially BPA and mercury!
I have become a part of a private group on Facebook for people with MTHFR, it is very helpful and I have learned a lot. Also MTHFR.net has been very helpful. I have had to take my health into my own hands because the infertility specialis that diagnosed me for MTHFR only put me on high dose folic acid. Grrr…
They say Dr.’s lag 20 years behind research, so hopefully more will be coming around soon!
I think the wiki article is incorrect. At least the first three other sources I’ve checked state that folic acid is the synthetic form of the vitamin, the one used for most supplements.
I think it has to do with the chemical terms vs what terms are used in the food industry. For example, chemically something can contain a molecule called ‘an alcohol’ where it’s not the same kind of alcohol that makes you drunk, so it can still be labeled ‘alcohol free’
Wikipedia is not an ideal source for health information. Folic acid is NOT the natural form of folate. Folate is a catch-all term for several forms of a given vitamin, including the synthetic folic acid, as well as other, natural forms such as folinic acid (note the extra syllable) and 5-methyltetrahydrofolate.
I’ve got at least 3 children with what I would now call “midline disorders”. (never heard the concept before, thanks, Cara). One has a tongue tie, one was born with a sacral dimple and one had a very, very small dental arch that had to be widened in order to make room for her teeth. This certainly has gotten me to think about whether those things might all come from a similar issue.
Hi, Sorry, Im 39 weeks pregnant and have foggy brain. Could you clarify? My husband and I were tested and we do not have the MTHFR gene (mother in law and bro in law do, thats why we tested)….
So does that mean that we ARE able to process the folic acid and dont need to worry about other supplements?
Thanks
Hi Mandy, I’m not completely sure. I think it would be okay. Personally, I think I will choose a natural rather than synthetic source of folate from now on though, I’m not sure if there are other issues that might arise later from the snythetic.
Mandy — unfortunately, no.
This post mentions 2 MTHFR genes. There are over 50 of them!! I did not test positive for the 2 main ones, but all my symptoms were congruous with MTHFR (methylation) issues… once I did the proper testing, I found out I had 37 out of the 51 genetic DEFECTS!! HOLY SMOKES!!
So, the only issue I have with this post is that it doesn’t mention that. :(
Here is one that is more in depth of what you SHOULD do… and probably at a fraction of the cost of going to a doctor. :) Good luck.
http://blog.purifyyourbody.com/2014/08/getting-genetic-testing-done-for-mthfr.html
I have been taking the New Chapter prenatal whole food based. Does this one have folate and not folic acid?
I believe this is made with folate.
I took this prenatal 4 years ago and ate a clean diet. I was not WAP at the time, so it was lacking in fat soluble vitamins but, it was above average. My perfect pregnancy ended with my son having a cleft lip and palate. My experience has made me skeptical of this brand. I currently have a healthy 3 month old and did not take this prenatal.
Ironic you said that… I took the New Chapter brand & had a child w/enamel hypoplasia… which another mother commented about her son having after her taking another prenatal. The child before her also had enamel hypoplasia & I was taking another food based prenatal for that pregnancy, but my other pregnancies after them I used Vitamin Code & the teeth were great on those kiddos. I wonder if New Chapter & the other previous brand I took had folic acid at the time I took them. I am suspecting I have the MTHFR mutation, but haven’t yet been able to have been tested for it.
Also, I had a cleft lip & palate at birth, but later found out it was due to a water contamination at the military base where we lived before I was conceived & when my mother was pregnant with me. All of my years of research said that cleft palates & cleft lips are due to womb development, but when they happen TOGETHER, it is very RARE & is usually from the mother being exposed to something before & / or during pregnancy. Is it possible you were living near a source of pollution or contamination when you were pregnant?? Just a thought…
I didn’t even know the cause of my birth defects until 30+ years after I was born. My mother blamed herself for my whole life until we finally found out what happened to use at the military base. Years later, one of my babies had an umbilical cord defect & it nearly resulted in the death of both of us. We lived near a bunch of GM-Ohno farmfields at that time. I think that was the cause of the cord defect. I have found a correlation to the defect & the farms… not that anybody would admit it. We have sinced moved & had more babies. None before or after that pregnancy (so far) have had any issues like hers.
What folate van I give my two year old as a supplement???
My kids like the MegaFoods kids vitamins. I think they’re meant to be swallowed but my kids chew them.
http://blog.purifyyourbody.com/2014/08/getting-genetic-testing-done-for-mthfr.html
Here is another post that actually explains the steps to figure out ALL your MTHFR issues — there are over 51 MTHFR (methylation) genes. Only testing 2 won’t do you much good.
And you can over methylate (too much methylfolate) and some people should not take the methyl form of B-12… they should take adenosyl or hydroxy-cobalamin (other form of “active” B-12 options.
Thanks Rebecca, that’s really helpful
how do you know if you are “over methylate”? And how do you know if you should take the adensoyl or hydroxy? Thank you!
I believe you’d need to see the genetic tests. Because I haven’t done testing now, I just am cautiously trying, and backing off if it seems to make things worse.
Hello Maria and Cara,
Over-methylation doesn’t occur in everybody. Certain genetic make-ups make one more or less prone to this effect. You can “guess” in that you may not feel well when taking higher doses (or multiple varieties) of methyl donors (methyl folate, methyl B12, MSM, SAMe, folinic acid, betaine, and others). These symptoms may include irritability, anger, hyper, insomnia. If so, taking a 50mg dose of niacin can alleviate the symptoms.
As for adenosyl or hydroxyl or methyl… it depends on your genetics, your toxic exposure, your infections, your oxidative stress level.
Blessings,
Eric Potter MD
Sanctuary Medical Care and Consulting
Serving Northeast and Middle Tennessee with Biblically Wholistic Healthcare
Note: none of this should be taken as medical advice, just general information on the subject.
I am an overmethylator according to my genetics and symptoms. I have COMT V158 ++, read up a bit about how various other genes determine the ability to break down other things. I cannot tolerate many methyl donors. After 2 weeks on methylfolate and methyl B-12, I experienced a terrible zombie like state with increased anxiety. I have seen others describe their reaction to this similarly after researching a bit. I am going to get the folinic acid form of folate by Seeking Health, and the Hydrox-Adeno B12 as well. Until I can order it next week, I am taking Garden of Life Raw Prenatal and getting extra leafy greens through diet. Of course trying to avoid enriched food as well.
Good evening,
I am glad to see this issue getting more attention. As a physician, I stumbled across this far-reaching issue in caring for a few patients and quickly recognized how far this rabbit hole goes! Now with one of Ben Lynch’s courses along with some experience helping patients, I am seeing how many patients now have more hope in addressing some chronic issues dismissed by other doctors before.
I can’t legally provide medical advice over this forum (and given the complexity of the issue, this is not a good idea anyway), but am available for those wanting to learn more in a formal setting.
Blessings,
Eric Potter MD
Sanctuary Medical Care and Consulting
Serving Northeast and Middle Tennessee with Biblically Wholistic Healthcare
how did you go about being tested? Like start at your primary dr and ask? I want to get tested but not sure how to start.
Sean Croxton talks about that in his video, linked above. 23 and Me will give you raw genetic material that you can analyze yourself, but I’m not so sure about letting them have my family’s genetic material in a gene library.
Hello,
23 and Me will give you raw data. You can then allow Genetic Genie, Live Wello or MTHFR Support to upload your data and provide you with a print out for pertinent SNPs (single nucleotide polymorphisms). This will give you some generalizations, but applying those to your own health is an art as much as a science. I care for other’s with methylation SNPs and provide consults for those needing help answering these questions.
Eric Potter MD
Sanctuary Medical Care and Consulting
Serving Northeast and Middle Tennessee with Biblically Wholistic Healthcare
Could you not just test to see if you have a MTHFR mutation and if not then assume that your body will turn folic acid into folate? Or is there something I am not understanding? Thanks
I could, I haven’t tested us though. I think even if we didn’t have MTHFR I would still avoid folic acid since it’s synthetic and less bioavailable. I see a difference in my energy when I take the methylated folate vs when I was taking prenatals with folic acid, so that’s good enough for me.
Hello Ada and Cara,
There is much more to it than that. Even if you just test for MTHFR, there are at least two important SNPs 677 and 1298 to address. Beyond that, there are several other enzymes that play a part in the cycles (SHMT, BHMT, CBS, DHFR, MTR, MTRR to name a few). Even more, infections, oxidative stress, hormones, and other vitamin/mineral deficiencies affect it.
Even if you don’t do the full testing, you should take methyl folate rather than folate . It is just better all around.
Blessings,
Eric Potter MD
Sanctuary Medical Care and Consulting
Serving Northeast and Middle Tennessee with Biblically Wholistic Healthcare
klaire labs vita spectrum is iron free check out the mg and Iu is a lot more accurate
Hi, I took Garden of Life Raw prenatal. They contain folate and also probiotics. I took additional probiotics as well as prenatal DHA and zinc. I ate mostly organic foods, all gluten free, (but admittedly a lot of gluten free pizza), drank fruit smoothies, and ate a lot of spinach during my pregnancy. I never took any medication during pregnancy- not even headache medicine. I had an all natural labor. My son was born with a tongue tie and he is now 4 months old. We had the tongue tie corrected but we are still struggling to breastfeed. He gets mostly formula. He is above average in height, average weight, and seems to be very advanced.
Just thought I’d share my experience with tongue tie.
I wonder if the gluten free pizza was fortified with folic acid? I also have no doubt that it’s more than just this that’s causing tongue tie, Weston Price showed that all kinds of nutritional deficiencies show up in the midline, it wouldn’t surprise me if it’s more than just folate.
Hello Cara,
Much more than just folate.
Blessings,
Eric Potter MD
Sanctuary Medical Care and Consulting
Serving Northeast and Middle Tennessee with Biblically Wholistic Healthcare
Note: none of this should be taken as medical advice, just general information on the subject.
GARDEN OF LIFE RAW, & any other whole food vitamins, contain folic acid! Folate when pulled out from foods cannot stay folate so it turns to folic acid! Which we with mutation cannot process it. Which means we DO NOT get enough folate. I too have 2 babies with lip ties due to taking Garden of Life once daily with 1st baby and raw one with 2nd. We need something actually methylfolate not whole food vitamin!!
We’re also an all organic, dairy free, gluten free, medication & vaccination free family. Wasn’t completely with the 1st pregnancy, but definitely with 2nd and 2nd baby is worse :(
Hi Cara,
I have a friend who is taking folate 800 mcg. She is not pregnant but is getting severe headaches on the days that she has taken it. She has googled headache and folate and not turned up anything. Do you have any theories as to why this might be?
Folate can cause headaches. Have your friend go “low and slow”. Have her start with 1/2 a dose and see if that helps the headache. She can take niacin or charcoal to neutralize the folate if she gets too much.
I hope you will remember to suggest getting tested for MTHFR. It’s reletively inexpensive and is a good way to tell if this even applies to you.
Cara,
What great information! I’m wondering….can you take the folate supplement along with a regular prenatal? Or would that be too much?
Thanks!
Lindsey
I would make sure the prenatal didn’t have folic acid, and just choose a multi or prenatal with folate or mythlated folate
Hey Cara!
Um, so this just kind of blew my mind! Penelope was tongue tied, and as you know, also has Sensory Processing Disorder.
Ok, so if I have MTHR, I have never been tested, it’s been on my consciousness radar for awhile, but I guess I have been procrastinating, I don’t know. I have a gut feeling that I am, it would certainly make sense why I have had so many miscarriages…so iif I have it, and I have not been processing folic acid well my whole life, how do I get rid of, “unplug”, the recepters??
Also, why does taking the B-12 make you more emotional?
Muah!
Stephanie ;)
Hi Stephanie, so glad you stopped by! I didn’t realize you also had a lot of misscarriages, that’s so sad, I”m sorry :( If you are avoiding folic acid (including enriched flour and products made with it), I think that your body would start using the folate in your diet. I’m not completely sure about the whole receptor thing, I’ll try to research more. I think even people with the gene mutation can process 15-30% of the folic acid, so even at that rate it might not take that long to process what you have in your system already.
For the B12, I think it’s just a healing reaction but I’m not sure. My kids don’t show signs of this, and neither does the other mom that I’ve given these supplements to.
Maybe you can help me. I’m in the process of learning about MTHFR and started taking New Chapter a month ago. I made it thru the 90count bottle and today received a 192 count bottle. And the Supplement facts on the larger bottle says: “Folate (as folic acid from culture medium)”
So is this appropriate to use, or no? Everything I read says if it state “Folic Acid” then avoid. But at the same time I see this company and vitamin recommended all over the place.
What am I missing? Thanks for your time and brain power!
Hi B, I”d have to look into it more. For right now I am using Seeking Health – they have quite a few vitamins. I’m sure there are more that are appropriate to use, but I haven’t done research on it. I’m not sure of that terminology.
Well, New Chapter is owned by Proctor & Gamble, and I dont trust their prenatal vitamins any more than I trust any other product they sell. I would stick with a non-multibillion dollar company manufactured vitamin such as Garden of Life, MegaFood or The Synergy Company.
re the New Chapter. Read a blog(don’t have the link sorry) by a Mom who is mthfr and that was one of 5 multis she recommended. In fact it was #2. I am sure she would have not had it on her list if it wasn’t appropriate for those with mthfr. My daughter is newly pregnant and since I have the hetero677 and 1298 she was tested. She has the 1298 hetero. OB said he could put her on baby aspirin for pregnancy if she wanted. He made no recommendations for the supplement/multi/folate. She is taking the New Chapter, Vit. D3, and Krill oil at this point. Not sure if anything else needs to be done, but I told her I would do some research for her. Thanks for this site. Very informative. Hard to actually know what is right and what is not enough and what is too much. Science of this doesn’t seem too settled as yet to formulate a good plan.
I looked up supplements you suggest in this style on Amazon. The chewable multi vitamin contains maktodextrin, also known as msg. This is some thing I absolutely avoid. Do you have another one you suggest without this ingredient for children?
I take Dr Rons B complex and it is amazing! It has folate L-5 as well. Love his products and shampoo but don’t get paid to say so. Just sharing. ☺️
Is it chewable? Ok for kids?
How would you find out if you have the MTHFR mutation? Is there a specific test I can request?
There is – geneticists can test, or you can do 23&Me yourself.
Hello,
I am a lab technician and I have my third son born on October 2011 diagnosed at age of 1 y 5 month as having a delay of speech and lake of concentration. He was diagnosed as on the autism spectrum. I am his mom and I felt that he has something other than autism. We live in a country were medication and medical staff are not up to date. My son has also tongue tie that was operated at age 2y. I sent blood to a laboratory outside the country and I found that he has a C677T MTHFR heterozygous mutation and he is carrying also a homozygous mutation of Factor V Leiden (G1691A). He also has a slightly elevated level of Lactic acid, pyruvate, copper, and creatine. He has always a slightly elevated level of Vitamine B12 and folic acid. Urine organic acids are within the normal ranges except an elevated level of oxalic acid and a slightly elevated level of acconitic acid. My second son has also a hyperactivity that decreased at age of 7 y. His paternal grandfather has Alzheimer, the grandmother and 3 uncles of my husband were also diagnosed with Alzheimer. The cousin of my husband has a son diagnosed with autism and another cousin has a son with epilepsy. A physician with a specialty of inherited metabolic diseases gives my son Coenzyme Q10 for 2 month but I stop it cause I didn’t mention any enhancement. After reading all your discussion above I was asking myself why not trying to give my son the methylfolate and methylB12. I need your support to advice me which one can I use for my son and at which dose cause I have asked man physicians here in my country and they do not have any idea about the mutation. Thank you in advance.
Hi! This article popped up on my FB newsfeed today and I was so happy to read it. I recently tested positive for one gene of the mthfr. I had a daughter last June who was born with a tongue tie and a fistula on her neck and I took the baby and me prenatal which is said to contain folate so that is odd to me.
My care provider started me on something called PodiaPN for the mthfr. I’m wondering if this can affect mood and depression..just curious if you have any knowledge on that. I feel like those two thigns are horrible for me right now. Would you recommend started a different supplement if you do know anything about it? This is all so new to me, like 2 months new so thank you for any insight!
Has anyone used Emerald Laboratories, I love these vitamins I’ve felt great since starting them they have the methyl b12 form and L-5mthf
Hi! I have a 9 year old boy that was born tough tied and he has mild fragile X wondering if foliate would be beneficial for him?
Hi! I have a 9 year old boy that is dignose with fragile x and he was born with his tongue tied just wondering if folate would be something I should try on him? Would love yalls in put on that :)
I’m TTC – do you think that’s sufficient for a prenatal? I always thought the folic acid was supposed to be boosted prior to conceiving- making a healthy egg :-)
I am fairly convinced that my son has this gene mutation, and am concerned about him getting enough folate now. I have midline issues myself, which included a breast issue which made my milk supply very low. Thus, I have had to give him formula which contains loads of folic acid. ALL of them. I don’t know what to do! Do you have any suggestions for this?
Hi Julie, if I needed to give my child formula I would give them a homemade formula. You can google for recipes and choose one that works for your family if you’d like.
You could also consider donor milk. Check out Human Milk 4 Human Babies.
Both of my daughters (9 and 11) , as well as myself, have the MTHFR mutations. Both girls are awful about taking pills. I have to open capsules and mix the content with applesauce. And sometimes that won’t even work. I just spent $37 on pre methylated Vit B capsules and they can’t handle them. Is there a chewable version? I feel like I’m being negligent by not getting the proper nutrition into them but these capsules aren’t going to cut it.
Do you have any suggestions?
Thank you
I use these chewables sometimes – if you’re on the GAPS diet they aren’t GAPS compliant though. http://amzn.to/1RJmlie
Thank you for posting this. I am also a GAPS mum, so know what it feels like to think about these things all the time!
I had my doubts about folic acid when I was pregnant, but so much was going on in my life (moving countries and running my own business) that I did not have time to do more than a few hours of research before deciding yes. It was the only supplement I took. I ate WP for my pregnancy with loads of greens and healthy food and probiotics. My son had a tongue tie that was not diagnosed properly and had to have 2 seperate cuts. The second one involved ‘therapeutic massage’ which was horrendous. Our breast-feeding battle saw me ill and floored with exhaustion…in the end I had to give up for my own health. We then had a battle with medical authorities because we chose to feed him WAPF home-made formula with raw milk (we were threatened with child protection agencies). At aged just over 1, my son then had emergency bowel surgery to remove a Meckel Diverticulum that was strangling his bowel. He very nearly died. This is a midline placenta remnant that doesn’t detach properly (in 6% of the population) and can get caught around the bowel.
I always wondered if his tongue-tie was to do with the folic acid. Now I am thinking it might have cause the Meckel too. We’ve (and me as a first time Mother) been through so much pain the last 2 years – and the thought that this could have perhaps been due to taking a supplement, that I wan’t sure about anyway (have lived my life eschewing supplements and medicine for many, many years) brings up soooo much in me.
I will get myself tested.
Thank you for sharing – I appreciate it. And best wishes for your continuing journey.
I took this prenatal 4 years ago and ate a clean diet. I was not WAP at the time, so it was lacking in fat soluble vitamins but, it was above average. My perfect pregnancy ended with my son having a cleft lip and palate. My experience has made me skeptical of this brand. I currently have a healthy 3 month old and did not take this prenatal.
I have three children and took my prenatal with folic acid with all my pregnancies. My first has a speech delay and we discovered at 4 years old that he also had a tt, when my 3rd baby was born. My 3rd baby had a tt/lt and alos has a high palate. My second baby doesnt have any issues that we know of so far. I had both of my son’s tt surgercly fixed. I hoping we can overcome my 4yr old son’s speech delay now that he had his tongue fixed and my now 3 mo. old is starting therapy to help him bottle feed. Do you think they will benefit from vitamins? I give my older ones otc vitamins and my baby just the d-visol vitamins
I wouldn’t give them folic acid personally, there are children’s chewables by seeking health that have mythl-folate in them. I tend not to give my kids vitamins (they’re not taking the folate right now, I think they get plenty from food)
As of 8/19/16 the link and some words seem to be missing.
Dear Cara,
I delivered my 3rd son in January. He is now 7 months old. He had a tongue/lip tie lasered several months ago. I have been worried about autism due to up close lack of eye contact and asymmetrical crawling:(. I am exclusively nursing. He also gets fruit and veggies. What would you do in this situation? Any supplements that you think could help him? Or something I should take? What would you feed him? Would you try to get blood work done? He’s so little…I’m hoping I can help him! I keep hearing the earlier the better! Thank you so much for any ideas! I’m so grateful!
Cara,
I appreciate the humility I always see in your blogs. It is a refreshment in our (cyber) world today. Also thank you for the great info and resources you share. I always enjoy and benefit from reading your blog.
Warm regards,
Sunny Edgren
Interesting article.
I’m a bit confused with this sentence…. Some people “posses” the enzymes needed …..
Under folate vs folic acid paragraph.
I’ve been reading about folate for pregnancy.
Thanks,
There was a typo :) Some people possess the enzymes needed. If you follow the link it may help clear it up a bit more. Basically some people do not have a problem turning folic acid into the natural form (folate) which the body uses, while some people just don’t have the enzymes needed to make that happen so no matter how much folic acid they take they are deficient. Hope that helps!
Katherine
What are your thoughts on the studies suggesting that too much folate or folic acid is linked to autism?
For example: http://www.jhsph.edu/news/news-releases/2016/too-much-folate-in-pregnant-women-increases-risk-for-autism-study-suggests.html
Frustratingly, this study doesn’t differentiate between folate and folic acid, but what do you think is causing this outcome? I wonder if I’m eating a diet full of leafy greens during pregnancy, could taking a vitamin with folate cause me to get too much?
I think that folic acid plays a roll in autism, and yes, if people are not absorbing folic acid, it will show up as ‘too much’ B9 in their blood tests I talked about it more here.
Be careful!! Even if a whole food supplement says ‘folate’ it could still be in form of folic acid because it turns into folic acid once processed!!!
Look for FOLINIC ACID OR METHYLFOLATE! These are the forms u want if u have mthfr. few people know about this. Spread the word!!
Does anyone know if there is a connection between the MTHFR gene mutation and a thin, stretched looking umbilical cord? My new baby is 5 weeks old and my midwife mentioned to me that she had never seen a cord like it and so I posted on a facebook group about it and was told to look into MTHFR since I also have PCOS. My 3 year old has allergies, eczema and asthma and I suspect is a little bit behind in development but nothing really significant. My new bub I suspect has a tongue or lip tie but this hasn’t been confirmed yet as i live rurally and don’t have a IBCLC nearby. I did take a chemist stocked multivitamin throughout both pregnancies with folic acid but not religiously.
Hi! I have a son that was born with a tongue tie and was diagnosed with Fragile X at 4 years old! We also have a 7 year old girl that does not have any challenges! We would love to have more children but we know we have the Fragile X gene so we just can’t make up our mind as to have more! I have been taking folic for a while, just wondering if this would help with our son and possibly help with preventing it?
Hi Lena, I believe that Fragile X is genetic. There are ways to use nutrition to change gene expression and the genes that are passed on (epigenetics) but unfortunately I don’t understand enough about it to give you specifics. In any case, I would always recommend switching away from folic acid and onto better digested forms of folate.
Thank you for this information. It has shed some light on my son’s diagnosis of be tongue tied. Although, my son is almost 28. When he was about 9 and ready for braces. We were informed he was tongue tied. Upon asking what the symptoms were, I was told – late talker, lisp and protruding teeth. My son began speaking at 12 mos, and spoke very clearly at 18 most (could say “my sister Sydney”). He never had any problem enunciation and his front teeth did not protrude. He did have issues with breast feeding. He would latch on ( as far as I knew) and feed forever and still seemed to be hungry. I chalked it up to my inexperience. After reading this, I am certain it was due to me taking folic acid, which did not agree with me, but I still took it faithfully. It all makes sense. Thank you, again.
So…my mother had a 10 hour brain surgery in 1986…five months earlier I had announced I wanted to be a neurosurgeon lol It didn’t seem so funny when we had to go live with my dad so my mother could recover without 3 little children to take care of. She couldn’t SPEAK in full sentences or even SMILE until she had that surgery.
Fast forward to 2010. I had MY first child. Less than one month after having him, I started noticing neurological deficit symptoms…not good. I KNEW they were that because..I’d watched my mother. February to September of that year I BEGGED my doctor to order a MRI. He finally did. Chari Malformation 1 WITH syringomyelia thanks to my all natural childbirth and pushing. I didn’t know I had chiari until AFTER delivery.
Fast forward again. 2012. Decompressed….then repair of pseudomeningocele later. Cleared for pregnancy. Daughter born in 2013…she cried…her face stayed reddish purple for over FIVE minutes on the OB OR clock. Uh oh.
From that SECOND I was asking pediatricians for a MRI. Her flesh tone took over FIVE minutes on the clock. I KNEW she had chiari and SERIOUS pressure, likely WORSE than mine was. It took me 3 pediatricians to look AFTER 2 suggested I was MENTALLY compromised and that EVERY thing I saw my daughter do that TO ME seemed like subconscious pain reaction, well, that was my daughter “manipulating” me they said.
So…3rd pediatrician ordered the MRI, SHE HAS CHIARI and her herniation is 3 times worse than mine and one of the WORST the pediatric neurosurgeon chiari expert here has EVER seen that is for now, not neurologically symptomatic beyond things like pain response…which to her feels “normal” because it is all she’s known.
I now have been told I likely have Ehlers-Danlos Syndrome, MCAD, and POTS. I have been having a HELLOVA time getting people to take it seriously. Because NONE OF IT IS CURABLE. I have spoken to them all about MTHFR, and every time I talk to someone new, genetics isn’t their field. The ONE gene guy in town that sees and evaluates ADULTS wouldn’t see me. Turns out, it was because I didn’t have a lab CONFIRMATION of some sort of my TYPE of EDS, etc. I just…I CAN’T WIN.
And that is what is the MOST terrifying. THIS IS A GAME to these people. Short of walking in and HANDING them every STITCH of evidence they NEED to make a diagnosis, WHAT research you’re looking at, what medications you already KNOW your body won’t tolerate, and you already are trying to make the dietary changes…these people, some of them STILL won’t DO THEIR JOB and even EXAMINE you. I had a doctor who I was seeing to take a skin biopsy and send it off for EDS genetic testing LOOK at me and say “You don’t have EDS….” in front of TWO resident STUDENTS and when he was finished talking down to me telling me he didn’t know WHY I thought I had EDS and I mentioned “vascular EDS…” his response was “What’s VASCULAR EDS?” I was okay with him being done…because he obviously knows NOTHING about EDS or the types and that VEDS is the most DEADLY…but he SWEARS he is an expert on identifying hypermobile EDS…and he is SURE I don’t that THAT.
Which turns out IS the type I most likely HAVE. NO exam. This guy and others are SEEING patients who may not know very much, who LEAVE these offices at dead ends. So many people in Chiari support groups commit suicide. I just….HOW is it that YOU, ME…how is it WE know SO much more than they do, they treat us like MORONS to our FACES, dismiss us….and NOTHING happens? NOTHING. No one does or says ANYTHING to these doctors.
Now…I am going to TRY to see this through FOR myself AND my children. It NEEDS to be on paper so TRICARE stations us where my children and I have ACCESS to care. If it isn’t on paper…we may not be somewhere that we have doctors that can HELP us. I was DESPERATE to get our daughter diagnosed and DOCUMENTED. Pediatric neurosurgery is NOT transferable to people who operate on adults. My neurosurgeon admitted…he does NOT try to operate on small children and he flat out refers people to a different guy in the department because, although they’ve disagreed on a couple topics, the peds neurosurgeon IS an expert on PEDS and my adult treating doc REFUSES to take that from him when he KNOWS he can’t do what the other guy can do.
WHY…..WHY aren’t there MORE doctors like THAT!?
Can you tell me HOW I can get this MTHFR gene mutation FLUSHED OUT and DOCUMENTED?! It would HELP so much if I had THAT to point at and from a starting board for the rest. I have been allergic to the sun, table sugar, nuts, and SO many weird things including drugs I never even HEARD of until I popped in an ER and was given IV reglan and got horribly ill IMMEDIATELY. Pain meds DON’T work on me, I”ve woken up on the operating table before…I have resistance to some antibiotics. My body is a MESS. I don’t want this for my CHILDREN.
IS there a TEST for MTHFR somewhere?
Hi. I am brand new to all this information. Just now learning this stuff, never had any clue about any of it before. I am wondering if you can REVERSE autism by taking some of the supplements I have been seeing listed on here. Also, have you ever heard of angelman syndrome? I have a brother who is 40 years old now. For several years (about 20) I have thought he may have autism. But recently I read an article about angelman syndrome and he fits the symptoms described in the article to a “T”. The article says that autism and angelman syndrome are not related at all. It says “as” is caused by a missing gene. But the symptoms are so similar to autism that I would like to hear your thoughts on it. Do you think there are any supplements I can give him that will help him? He has never been diagnosed with any labels other than “brain damage”. The doctors didn’t know anything about his symptoms back when he was little – meaning, they didn’t have the information at that time that is out there for them now. One more thing. When I was looking on the internet, it told me that autism runs in families and made it sound like it just can’t be helped. But from what I have been reading here, I am wondering if it DOES run in families, but NOT because its a hereditary thing that nothing can be done about. Is that true? Thank you for your help and information and advice!
Really interesting and even for skeptics, I think there’s little harm in taking the more active forms you mention vs conventional vitamins.
However, I feel it’s a slippery slope to think that it’s because YOU took the wrong vitamin that your child has tongue tie. We can have perfect diets and things can still go wrong (autism, food allergies, other illness, etc).
Mother’s diets while they are pregnant for sure impact the growing baby! In this case, it’s a folate (in usable form) deficiency. Babies with folate deficiencies have midline defects, and tongue tie is one of the most minor midline defects – cleft palate and spina bifida are two of the more major ones.
“Mother’s diets while they are pregnant for sure impact the growing baby?’ – yes, and these things also happen for other reasons, to mothers who did everything “right”, and it is disrespectful to assert that this is not the case. You can’t control everything through nutrition and care, however much you want to think you can.
I didn’t say *at all* that the only thing that matters is nutrition. Just that it does impact the growing baby- and it does. I have a child with a TBI, I’m well aware there are other causes of special needs.
Hi! What is the difference between L-5-MTHF and the multivitamin you recommended?
Hi, I’ve been taking a natural folate supplement for 4 years. I’m now 10 weeks pregnant aged 42. My midwife wants me to start taking 5mg folic Acid and 150mg aspirin. I told her I want my folate levels checked first, informed her about mthfr gene mutation and about neural tube formation being complete by 8 weeks.
Anyone got any more advice.
Thanks 😊
For the aspirin, do you have a history of losses? There is a select group of women that need to take that. I’d never recommend going against medical advice, but I might try to find another midwife if they were recommending folic acid.
Your ‘back here’ link is broken…page not found.