1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
Discuss the article on the Forums.

A question for the science crowd

Discussion in 'General ME/CFS Discussion' started by Snowdrop, Oct 28, 2013.

  1. Snowdrop

    Snowdrop Senior Member

    Messages:
    421
    Likes:
    598
    Toronto
    I have recently gone gluten free. It seems to me that doing so has definitely helped clear some of the brain fog.

    I am not a celiac and don't sufffer if I do eat some gluten. I know that some people are wheat sensitive as opposed to celiac.

    I'm not incredibly knowledgable on the subject but I got to thinking, from all the reading I've done here: is it possible that instead of being wheat sensitive that I am feeling benefit due to NOT ingesting folic acid that is a staple in fortified grain products?

    Any thoughts. It's really just curiosity on my part.
    merylg and Crux like this.
  2. PennyIA

    PennyIA Senior Member

    Messages:
    240
    Likes:
    301
    Iowa
    I can't answer your questin, but have had the same question in my mind. I do think that Celiac's is very different AND I do think that some folks could be tested for wheat and/or gluten for allergies. But, I have to wonder if there is a sub-set of the group that consider themselves gluten intolerant are actually having issues with a build up of folic acid and have Methylation issues. If I remember the stats roughly, there are around 50% of some population wth SOME FORM of MTHFR or other genetic isses with Folic Acid. In small amounts, and with a mild OR where the genes aren't expressing themselves, there probably isn't much issue. But I know the US has required all flour to be fortified with Folic Acid since 1998, although they did supplement some flours since the 70's (and several other countries passed similar requirements). And I wonder if 40 some years of ingestion combined with my not-so-minor MTHFR genetics aren't a bigger issue to me than the gluten. But, if I eat any bread, bakery item (now at about six months gluten-free); I get increased pain in my extremeties within a few hours. Of couse, the next step would be to try flour without folic acid. Ithink some folks posted that you can find it in international shops... but I thought all folic acid was required if the flour is sold in the US. I do know that 'per the experts' folic acid supplementation is considered SAFE. BUT, to this day, my medical doctor still thinks I should be taking folic acid for my high homocysteine levels even though I have tried to explain my methylation concerns with him a couple of times (hoping to educate him for his other patients). In the end, he's happy that I'm taking a 'form' of folate... which he doesn't have any reference as to why one form would be better than another and turns a deaf ear when I try to talk to him about it.

    But, maybe it's only considered SAFE because they aren't connecting the dots between LONG-TERM low level dosage and chronic health issues. I'm hoping that (with time - sigh) the more we understand Methylation concerns that folks might start questioning if it would be good to only supplement Folic acid for folks without any methylation defects and that the folks with defects should be able to purchase flour folic acid-free; and supplement with methylfolate.
    Crux likes this.
  3. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,821
    Likes:
    913
    US
    I think so.

    There is also a new thread about us (and other people) getting bad reactions to molds in grains, so you might be feeling benefit from not eating those.

    They add folic acid to rice and cornmeal too (in case you are still eating those) and some non-grain foods.

    (Rice is gluten free in nature, but it may have gluten added to it when they add the folic acid and others.)
  4. Snowdrop

    Snowdrop Senior Member

    Messages:
    421
    Likes:
    598
    Toronto
    Penny
    I suspect it would be hard to find flour that is not fortified with folic acid as it is a legal mandate.

    And if they do figure out that FA makes some people ill, in a perfect world the gov't would cover the cost of the MTHF supplement.

    SOS
    Thanks for that. I had no idea about the rice ~ we do eat that usually with fish at dinner (sigh)
    and I'm known in my family as the person who can taste mold where no one else can. Often it was in bread so I won't miss that.
  5. alex3619

    alex3619 Senior Member

    Messages:
    7,018
    Likes:
    10,795
    Logan, Queensland, Australia
    Whole grains often do not contain added folic acid, as the mandate is for refined grains. This is because whole grains contain natural folate.

    The percentage of people who have problems with folate appears to be about 20% in younger people, and 80% in older people. As you age the risk increases. This is new science, and not yet fully understood or replicated.
    merylg likes this.
  6. PennyIA

    PennyIA Senior Member

    Messages:
    240
    Likes:
    301
    Iowa
    I actually finally figured that out about brown rice. White rice is often enriched with Folic Acid even if it doesn't say it's enriched; whole grain brown rice is not. I was the mom who often went out of her way to buy 'fortified' or 'enriched' products, the juices with added vitamins for kids (even if it was only for me)... assuming that if it had more vitamins it MUST be better for you; as opposed to now knowing that my body (at minimum) can't process the synthetic forms as well and that it really is bad for me (well, at least as best I can tell with anectdotal experiences).
    Snowdrop likes this.
  7. Keela Too

    Keela Too Senior Member

    Messages:
    168
    Likes:
    337
    N.Ireland
    This is interesting. Any other links?
  8. PennyIA

    PennyIA Senior Member

    Messages:
    240
    Likes:
    301
    Iowa
    I've always believed that there's a certain capacity for our body to heal itself... but that it's got limitations. And at some point, the stresses, the toxins, the lack of nutrition, etc.... (varies by person, of course) exceeds that capacity. At this point, the body can't keep up with the stresses we put it under and things start going wrong. It is entirely possible that as we age, the folate builds up and builds up and the body is ok with it to a point, but by the time we're past a certain capacity level, it now starts having issues.

    I'm never going to find the direct link to the stats I'm about to share, but it might be another potential implication. The rate of MTHFR in the population is actually quite high even when we only test for the two most common genes. But if we only look at those two genes, we can't possibly tie them directly to health issues that might be methylation issues - often misdiagnosed as ME/CFS... because it's not a big enough picture and there are hundred's of thousands of people with MTHFR defects who aren't ill.

    I used Genetic Genie to get the bigger picture as a result of my 23andme testing... and one of the stats I read on mthfrsupport.net was that (in general) if you have 5 or fewer of the X number of genetic defects identified to date that can impair methylation or detoxing processes; that those folks will tend to start having memory issues, fatigue, intolerances, etc around their 80's. Well, lets face it.... lots of folks start suffering health issues and memory issues, etc in their 80's... that's almost 'typical' and most of them don't necessarily seek out treatment or diagnosis - they blame it all on getting old and cope as best they can. This almost exactly describes my Maternal Grandmother and Paternal Grandmother (maternal grandfather died young of heart attack and paternal grandfather died young-ish of cancer).

    If you have between 5 to 10 genetic defects in these genes, that you tend to get ill in your 60's... lots of these do try to seek out diagnoses, some blame some of the symptoms on aging... guess it depends on how bad they get how quickly... without being able to test my mother - I can guarantee that she had at minimum 4 genetic defects (and likely a few more) because I have four genes in the pathway that I have homozygous defects on - so she HAD to have passed those four on to me; as well as likely the rest of them. My father died young from blood clot complications after an injury. My mothed pass at 75 after dealing with chronic pain, chronic fatigue for about a dozen years. She did get diagnosed with Fibromyalgia based on pressure points (which honestly? Feels like a crappy way to diagnose someone) but did not get any relief from any treatments offered for Fibromyalgia. I truly believe she was misdiagnosed. And I was just learning about methylation issues before she passed and did start getting some relief from starting methylcobalamin.

    If you have between 10 to 20 genetic defects - that you tend to get ill in your 40's. Not sure how this is counted, and let's face it, I doubt the studies are overly conclusive at this point or moding western medical science would be paying more attention. But, if you count unique genes, I'm at 12 and if you count the homozygous defects as 2, then I'm at 16 - so I fall into this category. And sure enough, my health issues started when I was 39 and got way worse very quickly thereafter.

    More than 20 defects? You get sick much younger.

    I almost wonder how common the more than 20 defects are... and if that might not account for the 20% of folks who have trouble with folate at a younger age.... and how often that rate increases as you hit each of these age brackets and comparing that to the number of defects. It might actually paint a better picture. And I do think it also fits into the concept I have that our body's ability to handle the folate decreases with age because our internal healing capacity gets a little maxed out. It would also be interesting to compare societies that don't supplement with folic acid in their refined grains with similar diets otherwise (like comparing US/UK) and finding folks with similar genetics and see how often folks might be getting ill sooner with the mandated folic acid? It might not be a direct link... but I bet there are some interesting stats that could be helpful to start digging deeper.
    stridor likes this.

See more popular forum discussions.

Share This Page