MTHFR questions

[busymama7]

Disclaimer: we have never been tested.

 

I am attempting to follow the MTHFR protocol for my daughter who has been suffering with mouth cankor sores for a few years. I read that it could be caused by this gene and since nothing else have tried has worked we are trying this. I also have many/most of the symptoms as does my husband and have been suspicious of this for a while and since it is only an improvement on diet I feel we have nothing to lose.

 

We got her some approved kids vitamins (which incidentally we felt were helping a few months ago but we ran out). I am eliminating sources of folic acid but am not going gluten/wheat free at this time. We are using organic grain sources or making our own bread stuffs.

 

My question is, how careful exactly do we need to be? No birthday cake at a party? Or will occasional sources be ok if most of her diet is good and she's taking the good kind of folate?

 

I know there are websites and I've tried navigating them but it's just information overload and I can't do it all right now.

 

Thanks

[busymama7]

Sorry, not answering your question directly but wanted you to know that going 100% gluten free completely resolved my life-long battle with extremely painful, large and severe mouth ulcers.

Thank you. It is another thing we will try but I'm looking at this first as so many thing line up. We should just get tested to know for sure but don't have extra $ at the moment so trying this first.

[Spryte]

I have MTHFR and can have no gluten at all. Zero. It doesn't take more than a tiny amount for me to be glutened.

Edited July 22, 2017 by Spryte

[busymama7]

I have MTHFR and can have no gluten at all. Zero. It doesn't take more than a tiny amount for me to be glutened.

Is that because of MTHFR or is is co-existing? This whole thing is so darn confusing for me. It seems like there are conflicting opinions everywhere. I'm really not interested in going GF unless we absolutely have to. Right now I'm just trying to address the enriched products issue. It seems with the sores that it is a deficiency and so if we address the root of that deficiency it may help. Now I realize it may instead be a reaction to gluten and that will be our next step.

[Spryte]

Is that because of MTHFR or is is co-existing? This whole thing is so darn confusing for me. It seems like there are conflicting opinions everywhere. I'm really not interested in going GF unless we absolutely have to. Right now I'm just trying to address the enriched products issue. It seems with the sores that it is a deficiency and so if we address the root of that deficiency it may help. Now I realize it may instead be a reaction to gluten and that will be our next step.

I don't know. I have a lot going on. All is related to MTHFR, I think. Gluten free is not optional for me, no cheats here.

 

My DH has MTHFR, also, and does best with no wheat products. He does not need to be as strict as I do.

 

Our allergist would tell you to go strict gluten free (or whatever the suspected allergen is), monitor, then add back a lot of the suspected problem ingredient and note the results.

 

My GP would tell you that a little bit of gluten is like being a little bit pregnant.

 

And as the parent of a child with severe allergies, I'd personally tell you to get testing done and don't eliminate foods unless you have a true medical reason.

[Guinevere]

I think the deficiency is caused because the synthetic folic acid found in most grain products binds to the receptors for folate, but can't be utilized by a person with mtfhr.  So unless the sources of folic acid are removed, the body can't absorb folate from any source.  

 

I might have made that up, though, or just be completely confused.  I'm just starting this journey also, and there's just so much to figure out.

[wapiti]

Why not just find out?  Do the 23andme ancestry service and then upload the data file into genetic genie.  MTHFR is simply the tip of the iceberg when it comes to polymorphisms that can impact processing in the body.

I think it's probably not quite accurate to say that MTHFR is "causing" canker sores.  Rather, it may be a chain of events - it may be that suboptimal methylation has impacted the immune response to a pathogen.  I would think that an infection is the more direct cause and I'd try to address that in addition to anything you are working on to improve the immune response such as methylation workarounds with vitamins/supplements.

FWIW, I am homozygous for C1298C (or was it A1298A?  I can't recall) as is one of my kids; two of my other kids are compound heterozygous, A1298C and C677T.  I don't have any major issues that I know of.  One of my compound heterozygous kids has a ton of immune problems but that is due to way, way more than merely the MTHFR polymorphisms - long story.   ETA, I eat gluten without issue.  My compound heterozygous kids do too, though one of them tends to do better GF, I think (GI issues).  They are both better DF.

Edited July 22, 2017 by wapiti

[busymama7]

I don't know. I have a lot going on. All is related to MTHFR, I think. Gluten free is not optional for me, no cheats here.

 

My DH has MTHFR, also, and does best with no wheat products. He does not need to be as strict as I do.

 

Our allergist would tell you to go strict gluten free (or whatever the suspected allergen is), monitor, then add back a lot of the suspected problem ingredient and note the results.

 

My GP would tell you that a little bit of gluten is like being a little bit pregnant.

 

And as the parent of a child with severe allergies, I'd personally tell you to get testing done and don't eliminate foods unless you have a true medical reason.

This is actually one reason why I'm not going GF with her. Switching to non enriched organic grains first is an approach I feel better about.

[busymama7]

I think the deficiency is caused because the synthetic folic acid found in most grain products binds to the receptors for folate, but can't be utilized by a person with mtfhr. So unless the sources of folic acid are removed, the body can't absorb folate from any source.

 

I might have made that up, though, or just be completely confused. I'm just starting this journey also, and there's just so much to figure out.

This is what I understand too. I have always felt the sores were a nutritional deficiency and this gives me an avenue to work.

[busymama7]

Why not just find out? Do the 23andme ancestry service and then upload the data file into genetic genie. MTHFR is simply the tip of the iceberg when it comes to polymorphisms that can impact processing in the body.

 

I think it's probably not quite accurate to say that MTHFR is "causing" canker sores. Rather, it may be a chain of events - it may be that suboptimal methylation has impacted the immune response to a pathogen. I would think that an infection is the more direct cause and I'd try to address that in addition to anything you are working on to improve the immune response such as methylation workarounds with vitamins/supplements.

 

FWIW, I am homozygous for C1298C (or was it A1298A? I can't recall) as is one of my kids; two of my other kids are compound heterozygous, A1298C and C677T. I don't have any major issues that I know of. One of my compound heterozygous kids has a ton of immune problems but that is due to way, way more than merely the MTHFR polymorphisms - long story. ETA, I eat gluten without issue. My compound heterozygous kids do too, though one of them tends to do better GF, I think (GI issues). They are both better DF.

Because I don't have $100 to drop on the test and making changes to organic (while still costly) is a healthy choice and feels easier to me at the moment.

[busymama7]

Just another FYI: It really didn't take being gluten free very long to notice a drastic difference. Of course, it's up to you, but it would really be simple to try it for two weeks or so just to see. MIne were chronic (are yours?) so it was easy to tell. IF you do, make sure the diet really IS 100% gf.

It's my 7 year old daughter, not me. They aren't exactly chronic but cylical. Around every 6-8 weeks she breaks out really bad and then they clear up after 1-2 weeks.

 

if I eliminate gluten I will eliminate all or most of the folic acid anyways which wouldn't actually help me know if it was gluten or MTHFR. Eventually we will test her to be sure but for now the trial of MTHFR protocal is where I want to go first.

 

It's also not simple for a family of 11 to go gluten free. I've watched a friend and it's not a path I want to take unless I have to. We love my homemade bread :)

[mominco]

Did you try changing toothpastes and seeing?My son was using colgate and kept getting mouth sores and his dentist told us to switch 

toothpaste as colgate can cause mouth sores.It worked for my son.

                I also know one of the symptoms with chron's disease CAN BE mouth sores,atleast what my dd's GI says.

My Sil otoh always gets them and has no health conditions.She uses oral b mouth wash when she gets it,always before her cycle. 

[Katy]

Don't do something expensive like change to all organic food and expensive vitamins to see.  Start by changing toothpaste.

 

Use brown rice, avoid enriched everything, and give her a serving or two of beans every day for natural folate.  Also make sure she's getting enough Iron and Zinc.  Just track what she eats in cronometer.com or something, don't buy expensive organic anything or processed vitamins unless you want to.

 

And believe the poster above, MTHFR is NOT the first thing you address when you get into genetic medicine.  It tends to make things worse instead of better if you do. Just get good, healthy, and cheap nutritious food into her and stop using that toothpaste and see.

[busymama7]

Don't do something expensive like change to all organic food and expensive vitamins to see. Start by changing toothpaste.

 

Use brown rice, avoid enriched everything, and give her a serving or two of beans every day for natural folate. Also make sure she's getting enough Iron and Zinc. Just track what she eats in cronometer.com or something, don't buy expensive organic anything or processed vitamins unless you want to.

 

And believe the poster above, MTHFR is NOT the first thing you address when you get into genetic medicine. It tends to make things worse instead of better if you do. Just get good, healthy, and cheap nutritious food into her and stop using that toothpaste and see.

When I mean organic I mean in place of enriched stuff. Organic bread and rice and such does not have folic acid. That's all I'm talking about.

 

Toothpaste. Yes that. Not sure what to use. We will try anything. What is safe? Avoiding SLS?

[busymama7]

Did you try changing toothpastes and seeing?My son was using colgate and kept getting mouth sores and his dentist told us to switch

toothpaste as colgate can cause mouth sores.It worked for my son.

I also know one of the symptoms with chron's disease CAN BE mouth sores,atleast what my dd's GI says.

My Sil otoh always gets them and has no health conditions.She uses oral b mouth wash when she gets it,always before her cycle.

I actually forgot about toothpaste. We were going to switch her earlier but she probably cleared up and we forgot. We use Kirkland brand but will buy separate for her if you know what is good/safe.

[busymama7]

Don't do something expensive like change to all organic food and expensive vitamins to see. Start by changing toothpaste.

 

Use brown rice, avoid enriched everything, and give her a serving or two of beans every day for natural folate. Also make sure she's getting enough Iron and Zinc. Just track what she eats in cronometer.com or something, don't buy expensive organic anything or processed vitamins unless you want to.

 

And believe the poster above, MTHFR is NOT the first thing you address when you get into genetic medicine. It tends to make things worse instead of better if you do. Just get good, healthy, and cheap nutritious food into her and stop using that toothpaste and see.

Oh also, I don't see how using organic or homemade breads instead of enriched and giving her a vitamin daily (smarty pants) is going to make anything worse?

[Katy]

Oh also, I don't see how using organic or homemade breads instead of enriched and giving her a vitamin daily (smarty pants) is going to make anything worse?

 

Because if she has an MTHFR mutation and other mutations and she addresses the mthfr FIRST with a ton of expensive vitamins, it will cause a cascade of methylation issues that can exacerbate other health problems.  Stay away from that MTHFR.net site and find the sites of some actual doctors.  http://www.dramyyasko.com is good, though autism focused.  Her site does explain how other mutations need to be addressed first.  Get on the Yahoo group if you want - look back a few years.  You'll find DOZENS of people that said that switching to expensive vitamins made their rare health issues immediately worse, not better.

 

Natural folate in foods will never hurt, adding unnatural amounts in vitamins can and likely will immediately make things worse IF she has an issue.  And if she doesn't, you're wasting money you could be spending on getting the test in the first place.  Especially if the sore is solely a matter of iron deficiency or being irritated by a detergent in her toothpaste.

 

 

ETA: also, don't be insulting.  It will get you reported.

Edited July 22, 2017 by Katy

[Lawana]

I'm assuming the smarty pants aside is the brand of vitamin, not an insult.

[busymama7]

I'm assuming the smarty pants aside is the brand of vitamin, not an insult.

Oh gosh yes. I was telling you the brand. So sorry!

[busymama7]

Because if she has an MTHFR mutation and other mutations and she addresses the mthfr FIRST with a ton of expensive vitamins, it will cause a cascade of methylation issues that can exacerbate other health problems. Stay away from that MTHFR.net site and find the sites of some actual doctors. http://www.dramyyasko.com is good, though autism focused. Her site does explain how other mutations need to be addressed first. Get on the Yahoo group if you want - look back a few years. You'll find DOZENS of people that said that switching to expensive vitamins made their rare health issues immediately worse, not better.

 

Natural folate in foods will never hurt, adding unnatural amounts in vitamins can and likely will immediately make things worse IF she has an issue. And if she doesn't, you're wasting money you could be spending on getting the test in the first place. Especially if the sore is solely a matter of iron deficiency or being irritated by a detergent in her toothpaste.

 

 

ETA: also, don't be insulting. It will get you reported.

I will apologize again that that was the brand 😳and I did find it on a site as being safe but I hear what you are saying about trusting websites and I don't know at this point where it was from.

 

Let me just cry for a moment. I really thought I was on the right track. We have been trying to help her for 2 years and every doctor and dentist we take her to just shrugs and says who knows. 😢 I'm so overwhelmed and don't know what to do. Whenever I post here I get more confused about stuff. I should probably learn from that lesson 😉

[gaillardia]

Am I allowed to tack on a duh question/moment here? 

You might be saying that a gluten sensitivity can cause mouth ulcers, is that what you're saying?

You also are saying that it could be Colgate toothpaste? 

 

However, I got lost on the folate part. Is that a sensitivity also? Are you saying that some people can't take in folate? Or can't take it in certain forms?

I'm not arguing or anything. I have had mouth ulcers off and on for years and over the past several months have been cutting back on refined products, mostly flour products. I usually also bite the inside of my mouth and get ulcers, but sometimes they show up without having bitten while chewing, sometimes while talking. I am not having mouth ulcers or sores in my mouth for awhile now.

Just curious. 

[HollyDay]

I have not had genetic testing either.  But, my homocysteine levels are too high.  High enough that my doc thinks it is very likely I have MTHFR.  My vitamins are also "methylated."  I avoid all foods that say "enriched" or "fortified."  This can include rice, OJ, gluten free products.  Folic Acid can be added to a lot of things.  Who knew??!!

[Katy]

:grouphug: :grouphug: :grouphug:  It's always hard when we're worried about our children.

 

Sorry, didn't recognize that as a vitamin brand.

 

Have you had her iron, folate, and zinc levels tested?  Are you certain she's not nervously chewing on her cheeks or accidentally biting them?

 

Yes, MTHFR simply means that (if she has it) the part of her genes that enable her body to turn folic acid (synthetic folate) into a usable substance is broken.  It leads to higher inflammation if she doesn't eat enough natural folate (beans, greens) and eats too much synthetic folic acid (processed foods).  This can result in a variety of issues, but if her sole problem is canker sores (and not cold sores), I doubt that is the issue.  If she had a variety of hard to explain health issues that were all related to inflammation it would be a more likely solution.  For many people the most important issue is that it increases the risk of inflammation related issues like heart disease later in life, especially if you eat processed foods.

 

I would personally start with changing all oral health products  - like toothpaste - to something more natural. Even simply pouring a bit of a peroxide based minty mouthwash over her toothbrush first and then sprinkling a bit of baking soda on top instead of using toothpaste.  I would also get rid of abrasive foods (crunchy corn sugar cereal with a certain texture like Captain Crunch or cheese puffs gave me canker sores as a kid).

 

Then I would try a simple vegetarian diet that's low in processed foods and allergens, and high in anti-inflammatory foods.  This would look like:

1. Breakfast:  eggs (omelette with veggies or scrambled with fruit on the side, no toast, no citrus)
2. Lunch and Supper: brown or unfortified rice, beans, and veggies (let her use whatever sauce she wants for variety - salsa, salsa verde, soy sauce, sriracha, ketchup, etc)
3. Snack:  smoothie made from some almond milk, frozen bananas, frozen berries and a handful of spinach
4. Snack: apples or celery with peanut or almond butter
5. Snack /Dessert: rice pudding made with rice, cinnamon, almond milk, eggs, vanilla, and raisins

Try something like that for 3 days to start and then re-evaluate.  If she can stand the diet and her sores seem to be improving, have her continue for 10 days or 3 weeks. Then slowly add back in 1 additional food each day (in order of what she craves most) and see if the sores worsen and/or return.  If she seems to have a sensitivity to something, test it again a few more times, spaced a few weeks apart to make sure. This can be super cheap and waste free if you use prepared frozen veggies and pre-cook dried beans.  You can even spend a few hours on the weekend cooking and prepare a week's worth of meals to freeze in advance if you're busy. Smoothies pretty much have to be made day of, but otherwise you can always make these foods easily.

[mominco]

I actually forgot about toothpaste. We were going to switch her earlier but she probably cleared up and we forgot. We use Kirkland brand but will buy separate for her if you know what is good/safe.

So I switched him to crest cavity protection and when he did okay with that he is currently using Tom's of Maine.

Has not had any issues with either of them.

Any of the cinnamon ones bother him.

My husband's aunt at age 63 still gets mouth sores and at age 42 my Sil so seems like its in the family.I know Dh's aunt

eats plain yogurt when she gets the sores and says it helps.

Hth and GL 

[rose]

Totally off topic here but I'd never seen that abbreviation before and I couldn't help but read the title of the thread as an abbreviation for a nasty swear word. I think that I must be a little dense this evening. :laugh:

[bookbard]

SLS free toothpaste has reduced my mouth sores enormously. I agree that changing that first may do the trick. 

[maize]

Because I don't have $100 to drop on the test and making changes to organic (while still costly) is a healthy choice and feels easier to me at the moment.

If you have an interest in participating in research the University of Michigan is running a study called Genes for Good that will run a DNA test for free. They don't provide information about what SNPs/genes you have but you will be able to download your raw data and submit it to genetic genie or other analysis services.

 

Adults only, but you could test yourself and your spouse.

https://genesforgood.sph.umich.edu/about_study