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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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MariaOfColumbia

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

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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.

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

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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.   

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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.

 

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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 by majiksgirl

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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.

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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

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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 by majiksgirl

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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.

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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 by cyclinglady
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