Folic Acid Intolerance- it's not gluten after all for me

[MariaOfColumbia]

I'd been on  a strict gluten free diet for 7 years, but kept having problems.  Things got worse and worse and I kept cutting all kinds of carbs out of my diet until I was left with meat and a few vegetables.  Any kind of starchy carb would cause my gut yeast to go out of control and make me bloat and burp and have abdominal cramps like crazy.  Reflux and diarrhea, too.  It was terrible.  I was worried about nutrition the whole 7 years, so I took plenty of vitamins.

This year, I started showing signs B vitamin deficiency: cracks at the sides of my mouth that made smiling and yawning very painful.  They even bled.  This went on for months.   I got my doctor to test me for B12, and it showed abnormally high results.   A quick google showed that signs of deficiency along with high labs could mean I had the MTHFR gene defect- meaning I couldn't process cyanocobalimin (most common form of B12) and folic acid- an unnatural form of folate that is used in vitamins all the time and in enriched flours.

I'd had genetic testing done through 23andme a couple of years before, and a quick look at those results when run through promethease showed that I do have the MTHFR mutation.  Folic acid does me no good at best, and elevated levels cause problems.  So I stopped taking my B complex vitamin and the multivitamin and started supplementing with methylfolate and methycobalimin- the kinds of B12 and folate that my body can handle.  I also added in individual pills of the other B vitamins.

The cracks at the sides of my mouth healed.  After a week, I started trying starchy carbs again.  No problem.  No yeasty bloating.  I added more carbs, and even sugar- not a problem.

Then I got to wondering... could my problems all this time have been caused by folic acid?  In fact- a quick review of my medical records show my weird health problems BEGAN in 1998, when the US government first started mandating the inclusion of folic acid into many foods and most wheat flour products.

So, I crossed my fingers and bought some organic hamburger buns , made with non-enriched flour, and my husband and I ate burgers on real buns for the first time in 7 years.  There was no reaction.  I bought organic flour, non-enriched, and made biscuits and gravy with it the next day- not a problem.

It doesn't matter what I make- as long as there is no folic acid in it, my guts are fine with the product!  Apparently, somehow the high levels of  unmetabolized folic acid in my body were interfering with my body's ability to keep gut yeast under control.  

I'd had the test for gluten antibodies done early on, so it never made sense that I was so sensitive to gluten- but it turns out that it wasn't the gluten after all.  It is a problem with folic acid that is in almost all wheat products.  

Now, I did run into a problem with mislabeled commercial baked goods a couple of times.  It turns out that it's not even against the rules for bakeries to substitute a common ingredient like wheat flour with a *better* ingredient like "enriched wheat flour".    When this happened, all the old symptoms started up again.  The first time it went on  long enough my mouth was back to cracking and bleeding again before I figured it out.  It is very clear to me that I cannot tolerate folic acid in any quantity any more.  I've been sensitized to it, I guess.  It just took me 18 years to figure out exactly what the problem was.

So, I bought a bread machine and am making my own bread again. I did hedge and get one with a gluten free option, just in case this is all just a temporary fluke.... but I don't think so.  I've been eating wheat products since May and have had no ill effects yet- as long as I'm the one that makes them.

Too much folic acid is bad for you even if you don't have the MTHFR mutation, btw.  

Anyway, I'd love to hear if anyone has similar experiences.

[Fundog]

Holy Carp, Batman!  That is just crazy!   I'm so glad you finally found out what was causing your troubles.  And congratulations on being able to eat "real" bread again, lol.  

[Alwayssomething]

A lady I work with just discovered the same thing.  She too was gluten free but continued to be sick, then a year or so ago nausea was added to her symptoms and a new doctor ran genetic testing and found the same thing.   She is doing very well on her new diet and has added some gluten in but very little because she still feels better without it in her diet.   

[MariaOfColumbia]

She's lucky her doctor thought to check!   Mine was clueless.  It didn't even trigger any sort of query on her part when the B12 levels came back abnormally high.    I was desperate at that point.  There really wasn't anything else I could cut out of my diet at that point!  I'd already trimmed it down to vitamin deficiency levels!  I thought I was taking care of that with supplements, but it also turns out you can't store the B vitamins in a clear container.  

I'd been using a clear pill organizer to keep all those pills straight, and during my frantic googling for why I might be having a vitamin deficiency also turned up the fact that about half the B vitamins, Vitamin C and something else (I forget) are not light stable!   I was only getting working pills for a day or two after I refilled the organizer.  That was embarrassing.  I really ought to have run across that fact sooner in my life.

But the folic acid is the big culprit.  It fooled me into thinking I was gluten intolerant for YEARS.

Oh, and organic foods can have folic acid added, too.  Gotta watch the labels.

 

[majiksgirl]

MariaofColumbia,

 

I came across this thread when a two different friends had posted on facebook.  I read it and felt like you were talking to me.  I've had issues for 7 years now.  My candida cannot get under control.  I went and checked my vitamin B levels and they are high.  I've been on methyl folate for several months now, but only one pill a day.  I do have one MTHFR gene mutation.  I've tried SO MANY candida diets/options and the minute I stray it is back out of whack...or it never really gets rid of it.  I pick up viruses fairly frequently because my immune system is so taxed.   I'm wondering if you could go into more detail as to what exactly you started taking/how often/what foods you still avoided (sugar/vinegar/mushrooms/peanut butter/etc), and where your healthy B levels are at now?  Please, any further information would be very much appreciated.  Thank you!

Edited October 19, 2017 by majiksgirl

[kareng]

10 hours ago, majiksgirl said:

MariaofColumbia,

 

I came across this thread when a two different friends had posted on facebook.  I read it and felt like you were talking to me.  I've had issues for 7 years now.  My candida cannot get under control.  I went and checked my vitamin B levels and they are high.  I've been on methyl folate for several months now, but only one pill a day.  I do have one MTHFR gene mutation.  I've tried SO MANY candida diets/options and the minute I stray it is back out of whack...or it never really gets rid of it.  I pick up viruses fairly frequently because my immune system is so taxed.  I'm so very tired of dealing with this!!!  I'm wondering if you could go into more detail as to what exactly you started taking/how often/what foods you still avoided (sugar/vinegar/mushrooms/peanut butter/etc), and where your healthy B levels are at now?  Please, any further information would be very much appreciated.  Thank you!

The Op hasn't been on the forum for over a year.  Not sure if she has notifications turned on.

 

you might want to re- think putting your real name on a forum that will Be seen by thousands of people & a dozen trolls.

[Ennis-TX]

10 hours ago, majiksgirl said:

MariaofColumbia,

 

I came across this thread when a two different friends had posted on facebook.  I read it and felt like you were talking to me.  I've had issues for 7 years now.  My candida cannot get under control.  I went and checked my vitamin B levels and they are high.  I've been on methyl folate for several months now, but only one pill a day.  I do have one MTHFR gene mutation.  I've tried SO MANY candida diets/options and the minute I stray it is back out of whack...or it never really gets rid of it.  I pick up viruses fairly frequently because my immune system is so taxed.  I'm so very tired of dealing with this!!!  I'm wondering if you could go into more detail as to what exactly you started taking/how often/what foods you still avoided (sugar/vinegar/mushrooms/peanut butter/etc), and where your healthy B levels are at now?  Please, any further information would be very much appreciated.  Thank you!

I got rid of a candida issue in a few months with diet and a supplement. You have to cut out all carbs, starches, sugars for awhile.

Look up Dr. Tobias CandidaFX and check this out for the diet https://cdn2.hubspot.net/hub/141325/file-699888490-pdf/resources/4410.pdf

[majiksgirl]

Ennis_TX

 

Can you please delete the post that you just created as I had my name attached to it and have edited that out of my original post?  I unfortunately cannot edit your post.  Also, thanks for the candida diet suggestions.  I've looked at the link and have gone that route before.  

 

Edited:  Never mind!  I am new to this group.  I see that it updated it automatically.  Thx!

Edited October 19, 2017 by majiksgirl

[Ennis-TX]

32 minutes ago, majiksgirl said:

Ennis_TX

 

Can you please delete the post that you just created as I had my name attached to it and have edited that out of my original post?  I unfortunately cannot edit your post.  Also, thanks for the candida diet suggestions.  I've looked at the link and have gone that route before.  

Done and wish you luck. I moved to a full on keto/paleo diet after also. This might be why it does not come back, once you get rid of it probiotics help keep it in check as they eat the yeast.

[cyclinglady]

12 hours ago, majiksgirl said:

MariaofColumbia,

 

I came across this thread when a two different friends had posted on facebook.  I read it and felt like you were talking to me.  I've had issues for 7 years now.  My candida cannot get under control.  I went and checked my vitamin B levels and they are high.  I've been on methyl folate for several months now, but only one pill a day.  I do have one MTHFR gene mutation.  I've tried SO MANY candida diets/options and the minute I stray it is back out of whack...or it never really gets rid of it.  I pick up viruses fairly frequently because my immune system is so taxed.   I'm wondering if you could go into more detail as to what exactly you started taking/how often/what foods you still avoided (sugar/vinegar/mushrooms/peanut butter/etc), and where your healthy B levels are at now?  Please, any further information would be very much appreciated.  Thank you!

I can not help you with the Candida  issues (except to advise reducing sugar from your diet and talk to your doctor about antifungals).  I can tell you that my folate and B vitamin levels were off the chart.  No, I did not have cancer, which is what you will find if you google).  Yes, I have autoimmune  issues and maybe I have the MRTHR gene (never tested....why bother?).  Instead, I gave up all supplements even those found in processed foods.  

My lab reports are all normal after a year.    I am not deficient in anything at this time.  

Vitamins and supplements are a good thing, but they are not for everyone.  There is no “one-size-fits all”.  

Consider changing your diet to include just whole, unprocessed foods like the ones your Great-Grandparents ate.  Eat a varied diet full of vegetables, fruit, nusts, seeds, meats, fish and grains.  See if things improve.  Work in the Candida diet into this Whole Foods diet, but find out why you think you have a Candida issue.  This should be diagnosed by a medical doctor.  Systemic Candida is rare and is usually found in people with immune-related illnesses.  

If you suspect celiac disease, get tested.  It is a simple blood test.  Learn more:

http://www.cureceliacdisease.org/screening/

 

 

 

 

Edited October 19, 2017 by cyclinglady

[MariaOfColumbia]

Sorry I was gone so long.  I thought I had notifications turned on. 

I take a sublingual methylfolate every day and a sublingual B12 called methycobalamin.   I take a B complex vitamin that doesn't have folic acid.  Then I take the other supplements that would be in a multivitamin.  But I can't take a multivitamin because they all seem to have folic acid or cyanocobalamin in them.

When I eat at restaurants, I have to eat gluten free because there's no telling what kind of flour they use.  When I cook at home, I read the labels and make sure that everything is folic acid free.

After 2 years, I can tell you that I'm not having yeast problems any more.  Even a long term fungus under one toenail is gone.

The few times I've cheated, half the time I seem to have a boil appear a day or two later.   That's painful enough to convince me that the immune suppression is a real thing and I really shouldn't be tempted by fried, breaded meat like that!

There are other issues. There always are.  But finding out about MTHFR and folic acid was a big part of the puzzle for me.

[Andy316]

Maria, I am so hopeful after reading your post. I am beginning to think that I may have a Folic acid intolerance myself that has kept me bloated and inflammed for all these years. I wanted to know if supplementing with Methyl Folate and B12 is a permanent thing or 1-off? Also which brand would you recommend to take. Thanks

[Posterboy]

Andy316,

If you think it is a Folic Acid Intolerance read this article about it on Celiac.com

****this is not medical advice but I hope it is helpful.

2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy,

[cyclinglady]

According to this article posted by PosterBoy and published on Celiac.com, A huge percentage of the population most likely has the MTHFR genes (which has not been studied much).  Supposedly, if you have the gene or a variation of it, you might not be able to process some vitamins that are found in supplements.  The solution would be to get your nutrients from real food.  If you are a newly diagnosed celiac, it may be helpful to take vitamins that are methylated provided you actually have deficiencies.  Once healed, you should be able to absorb all your nutrients from food.

You can learn more about the MTHFR gene from a this reliable source:

https://rarediseases.info.nih.gov/diseases/10953/mthfr-gene-mutation

I am healed (repeat biopsy confirmed), have no deficiencies and take no additional supplements.   My B-12 and Folate levels are still elevated despite NOT taking supplements or eating processed foods that add it for years.   I did take some digestive enzymes and iron to speed the healing process for the first few months after my initial diagnosis.    I did not benefit from the enzymes (that I could determine), but my iron stores improved in just a few months.

Avoiding gluten is your best bet for healing.   If you are not healing, follow-up testing should be done to determine if you have another illness or if your celiac disease is still actively flaring or to rule out refractory celiac disease.  

I sorry that that the original OP (Maria) had to go gluten free for seven years, only to find out that she does not have an issue with gluten.  

 

Edited May 31, 2018 by cyclinglady

[MariaOfColumbia]

Andy316,

I haven't tried going off the methylfolate and methylcobalamin yet.  I have read that the sublingual (under the tongue) ones are far more effective than the swallow kind.

My choice of brand is determined by what kind of sweetener they use in the formula.  I'm very intolerant to artificial sweeteners, so I only use brands that have lactose or dextrose added.  I wouldn't mind no sweetener at all, but that doesn't seem to be an option for a sublingual.  I guess the manufacturers think we are all wimps.

 

 

[Andy316]

Thanks everyone for the valuable advice. I have ordered meself a bottle of Jarrow Formulas Methyl B-12/Methyl Folate(Contains a tiny amount of B6 as well) and is of the sublingual type. Praying this rids me of this curse (Gluten/Dairy intolerance). I will keep you posted of my progress. On a side note, 2 weeks back I got bloodwork done for my thyroid and I seem to be on borderline Hypothyroid. I started researching and seems primary cause for Thyroid diseases is due to some sort of untreated "Autoimmune" condition and/or Vitamin D deficiency. So if any of you feel lethargic, dry/falling hair and skin, anxiety, depression....check your Thyroid hormone/vitamin D levels.

[cyclinglady]

12 hours ago, Andy316 said:

Thanks everyone for the valuable advice. I have ordered meself a bottle of Jarrow Formulas Methyl B-12/Methyl Folate(Contains a tiny amount of B6 as well) and is of the sublingual type. Praying this rids me of this curse (Gluten/Dairy intolerance). I will keep you posted of my progress. On a side note, 2 weeks back I got bloodwork done for my thyroid and I seem to be on borderline Hypothyroid. I started researching and seems primary cause for Thyroid diseases is due to some sort of untreated "Autoimmune" condition and/or Vitamin D deficiency. So if any of you feel lethargic, dry/falling hair and skin, anxiety, depression....check your Thyroid hormone/vitamin D levels.

Autoimmune Thyroiditis is it’s own separate autoimmune disorder.  It can be somewhat treated by replacing the hormone that is diminished or destroyed by thyroid antibodies (prescription).   It is the cause of about 80% of thyroid disorders.  You should ask your doctor to screen you for thyroid antibodies.  Hashimoto’s Thyroiditis is commonly linked to celiac disease and Type 1 diabetes (both autoimmune).  

It sounds like you have the possibility of having celiac disease. Taking methylated supplements will NOT cure the thyroid or celiac disease (gluten intolerance).  Lactose (milk sugar) is common in celiacs due to the damaged villi which releases the enzymes to digest lactose.  Or you could be one of a zillion people who are genetically predisposed to lactose intolerance (google it).  

Spending money on a folate or b-12 supplements will not resolve a gluten or lactose intolerance.  It appears that Maria never had an issue with gluten after all.  Too bad she spend SEVEN years of being gluten free with little improvement in her health. 

Maria, please eat some sourdough bread for me!  ?

 

[cyclinglady]

If you suspect a gluten issue, get tested for celiac disease BEFORE going gluten free!   Learn more:

https://www.beyondceliac.org/celiac-disease/get-tested/

[Posterboy]

16 hours ago, Andy316 said:

I started researching and seems primary cause for Thyroid diseases is due to some sort of untreated "Autoimmune" condition and/or Vitamin D deficiency.

Andy316,

I don't know if all thyroid problem are auto immune or not? they may be ? I am not sure.

but sometimes supplementation can help when people are willing to try it.

I had the beginning of a thyroid problem 10+ years ago and taking selenium (as first a Kelp supplement then Brazil nuts in my diet) helped my thyroid correct itself.

You are right about the Vitamin D issue too.   I was low in Vitamin D at the time too! With Low Vitamin D there is a link to thyroid health.

Here is the research on the Vitamin D connection entitled "Vitamin D supplementation reduces thyroid peroxidase antibody levels in patients with autoimmune thyroid disease: An open‑labeled randomized controlled trial".

https://www.researchgate.net/publication/301227488_Vitamin_D_supplementation_reduces_thyroid_peroxidase_antibody_levels_in_patients_with_autoimmune_thyroid_disease_An_open-labeled_randomized_controlled_trial

Here is the connection to Selenium entitled "Myo-inositol plus selenium supplementation restores euthyroid state in Hashimoto’s patients with subclinical hypothyroidism"

The research on Selenium and Vitamin D are fairly recent and most doctor's are probably not clinically are of this relatively new research.

https://www.europeanreview.org/article/12297

You might also eliminate/reduce the soy  in your diet.

Here is how it can effect thyroid medicine entitled "Use of soy protein supplement and resultant need for increased dose of levothyroxine"

https://www.ncbi.nlm.nih.gov/pubmed/11421567

I would also have your doctor check your stomach acid.

Hypo or achlorydria is associated with low Vitamin D status and Hypothyroidism.

https://www.healthline.com/health/achlorhydria#diagnosis

quoting heathline

Symptoms of achlorhydria

"Achlorhydria can increase your risk of developing iron deficiency anemia. Without stomach acids, the body will have issues absorbing iron.

Other vitamins and minerals such a calcium, folic acid, vitamin C, and vitamin D also rely on adequate stomach acid for their absorption into the digestive tract."

Hypothyroidism according to heathline is risk factor for achlorhydria.

quoting again.

"There are a number of factors that can contribute to developing achlorhydria, including:

• Hypothyroidism. This condition can significantly slow down your metabolism, resulting in a decrease of gastric acid production."

****this is not medical advice but I hope it is helpful.

I found out I had low stomach acid and after treating it with BetaineHCL (powdered stomach acid) it helped trigger my own stomach to again begin making it's own stomach acid.

Here is my story about how I had to figure out on my own I had low stomach acid misdiagnosed.

good luck on your continued journey.

Again ****this is not medical advice just things  I found that it helped me with my thyroid anomalies . . . at least before things stablized and I can only assume supplementing with Vitamin D and Selenium help my thyroid correct itself.

2 Timothy 2:7 Consider what I say; and the Lord give thee understanding in all things.

Posterboy by the Grace of God,

[Andy316]

Thanks a lot Posterboy for the valuable information. For the Thyroid, Im taking 2 brazil nuts along with seaweed and vitamin d supplements everyday. Also making it a point to get natural sunlight everyday for an hour atleast. Also, a very important point to add is to see you are minimizing/removing fluoride intake as this can hamper iodine absorption when treating thyroid. I am now using a 'No fluoride/Gluten Free' toothpaste and drinking spring water.

 I agree if I look back the years, my gut issues started following a severe deficiency of vitamin D. I also attribute my gut issues to prolonged intake of 'artificial' protein supplements and a diet high in meat and carbohydrates (and less of green veggies and fruits) and stress/anxiety caused due to work. 

If I may ask you, how much time since you started selenium/kelp supplementation that your thyroid was back to normal?

[Posterboy]

Andy316,

I tend to be a little aggressive with my supplementation schedule so I might not be  the best to ask.

but most people will notice a difference in 3 months and 6 months at the outside range.

There a two reasons mainly for that and I probably can't explain this all in one post/reply.

It takes about 3 months for most people's Villi to heal and 3 more months after you begin absorbing these minerals again to restore your body naturals' halogen balance between idodne, sodium and the other toxic halogens your body might now be full (metaphorically speaking) of instead of healthy/beneficial iodine.

Here is a good article on how absorption occurs in the body through the blood stream first in the stomach and ultimately in our Villi in the small intestine using active and passive absorption.

http://education.seattlepi.com/food-nutrients-bloodstream-osmosis-4574.html

Here is an article about it how it (Iodine) remove floride and bromine in the same way from the body by displacement.

http://www.naturallifeenergy.com/iodine-removes-fluoride-from-the-body-and-serves-as-a-fluoride-detox/

If you notice a smell (B.O.) problem it is working.  It is a sign the other toxic halogens (bromine etc.) are being replaced with the healthy iodine and sweated/extracted out of your body.   You will probably notice this body odor smell yourself and find yourself showering a little extra to make up for the extra Bromine  be excreted and be self conscious for a couple weeks. This is a temporary effect and will shortly go away when all the binding sites have been replaced with Iodine.

Another home test is Iodine loading test.  Paint an one inch swab of betadine (Iodine) antisecptic one your skin (arm or thigh works well).  It will dry in a few minutes.  . .. go to bed if it is still there in the morning (stained) your body has absorbed enough iodine through supplementation.  If it has disappeared then your body is still low in Iodine. . . .this is an in exact test but nominally helpful.

Once my body begin rejecting absorbing Iodine through my skin my thyroid begin to improve.

You can also have Bromine in your diet (that you might not be aware of) that can be thyroid toxic.. . . ironically it is in most bleached flours unless otherwise stated.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC501258/pdf/jclinpath00206-0074.pdf

Here is an article about it.

https://www.livescience.com/36206-truth-potassium-bromate-food-additive.html

And one on livestrong

https://www.livestrong.com/article/554803-food-additives-bromine-and-thyroid-disorder/

you can also self monitor your body temperature (+ or -) one point in your afternoon body temperature is considered normal for most people. . . anything more than that is out of range and a sign the the thyroid is not working properly.

The thyroid is the bodies thermostat and how we regulate our body temperature and why doctor's traditionally/typically check your normal body temperature.

I hope this is helpful.

****this is not medical advice just some of the ways I have supplemented that helped me.

good luck on your continued journey.

2 Timothy 2:7 Consider what I say; and the Lord give thee understanding in all things.

Posterboy by the Grace of God,

[Andy316]

Update: I have started taking the Methyl b6/b9/b12 formulation over the last 2 weeks. With a lot of praying, I ate my 1st lebanese chicken sandwich (Shawarma) yesterday and I gottu tell you guys, it was amazing. All my  major post gluten eating symptoms like Joint pains, fatigue, headaches all gone, I felt more energy after eating this time. Only side effect which dint go away was the stomach bloat which I think as posterboy mentioned is due to low stomach acid, but Im happy that atleast I can eat the occasional gluten every now and then. I will continue taking this methyl B combination and update if I see any further progress. 

[Emie]

My son has been experiencing a reaction of continuous reflux and moderate to strong cramping after eating anything with enriched wheat flour. For example, if he has one purchased cookie,  bagel or pancake he has this reaction and then has reflux and discomfort for about a week. It’s awful. The only good thing is it’s non-acid reflux. 

It sounds like folate is worth talking to his doctor about. Does anyone else have reflux as a symptom?

[Scott Adams]

Hi @Emie, welcome to the forum. Since this forum is dedicated to those who don't eat gluten, which is in wheat flour, it may be hard to answer your question, as for most of those here eating gluten is the trigger for many of their issues. 

If you son has reflux and cramping after eating gluten, definitely get him screened for celiac disease. A blood panel is the proper way to begin, just be sure he continues to eat gluten until all tests are done.