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Exhausted? Could Be Anemia Due To Folate Deficiency

IrishHeart

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IrishHeart Veteran
IrishHeart
Posted

Hi Everyone!

If you are still having headaches, feeling tired, short of breath, dragging your feet, depressed, hair still falling out (and maybe your tongue feels inflamed)and it is NOT your thyroid or D-3 level, because those are "normal".... and you know for SURE you are 100% gluten-free...and still feel lousy...well, you may have a FOLATE deficiency.

PLEASE, ask the doc to test your FOLATE level as well as your B-12 level as BOTH of these are drastically impacted with celiac. BOTH forms of anemia can result.

Someone may have already posted all this long before I joined the forum--and many of you probably already know this --in which case, sorry for the repeat info. It's just so frustrating for me to have to keep figuring these things out for myself and I wouldn't want anyone else suffering needlessly.

I am so PISSED OFF because I asked repeatedly for 2 years "WHY am I SO TIRED???" but cannot sleep????...they just kept checking the B-12 level, which was FINE because I take B-12....they NEVER tested the serum folate!!!

SONUVA....

and yes, this is VERY COMMON in celiac and malabsorption so EVERYONE should have this testing done.

Why aren't the doctors more helpful??????? I am so angry and sad. I have to keep fighting to be heard, to be helped.

It's a damn good thing I can read ( which wasn't easy all "glutenend up" and unable to comprehend for 2 years) and learn what goes wrong in a body with malabsorption. But my question is, why do WE have to be our own doctors??

ARRGGHH!! okay, rant over :D geesh..... here is a link to read. Hope this helps!!

Open Original Shared Link

HERE's another from GIG:

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eatmeat4good Enthusiast
eatmeat4good
Posted

Thanks for sharing everything you learn. We will make Dr.'s out of them yet. Or we will get healthy in spite of them...keep reading IrishHeart!! Can't wait to see what yer gonna do when yer really well! There will be no stopping you! ;)

IrishHeart Veteran
IrishHeart
Posted
  • Author

Thanks for sharing everything you learn. We will make Dr.'s out of them yet. Or we will get healthy in spite of them...keep reading IrishHeart!! Can't wait to see what yer gonna do when yer really well! There will be no stopping you! ;)

ah, my meaty friend :D ...glad I can help somehow. YOU ---and everyone else on here--- have been a LIFELINE...really couldn't do this without the support of this awesome community!! :D

mushroom Proficient
mushroom
Posted

That's what happened to me too. I self-diagnosed and found this place. I would read on here, then go to my doc and say, I need to be tested for x and y. Usually they were low. Then I would read some more and say I need to be tested for z and a. Take supplements for those, still feel bad, say I need my thyroid tested. Got the results (always copies for my file) and she said they were fine (in normal range). Read more on here and told her, those ranges are out of date, and the reason I am so cold all the time IS my thyroid. Got my meds, and warmed up. She has always been great, will test for whatever I ask for because she knows I know more about it than she does.

Two of my deficiencies were B12 and folate. I kept getting these blood test results showing my MCV was high. She said it was mean cell volume and it was "just" out of range. Well that "just" out of range combined with the low folate and B12 meant I had pernicious anemia and that is why I felt like crap all the time.

So as with everything else in life, you can't afford to leave it to the experts, Yes, you have to be your own doctor, your own lawyer sometimes, your own scientist (especially when it comes to GMO), and on and on ..... I can't imagine being a head in the sand kind of person. Sure, it gets us riled up, but on some level we do effect change.

IrishHeart Veteran
IrishHeart
Posted
  • Author

That's what happened to me too. I self-diagnosed and found this place. I would read on here, then go to my doc and say, I need to be tested for x and y. Usually they were low. Then I would read some more and say I need to be tested for z and a. Take supplements for those, still feel bad, say I need my thyroid tested. Got the results (always copies for my file) and she said they were fine (in normal range). Read more on here and told her, those ranges are out of date, and the reason I am so cold all the time IS my thyroid. Got my meds, and warmed up. She has always been great, will test for whatever I ask for because she knows I know more about it than she does.

Two of my deficiencies were B12 and folate. I kept getting these blood test results showing my MCV was high. She said it was mean cell volume and it was "just" out of range. Well that "just" out of range combined with the low folate and B12 meant I had pernicious anemia and that is why I felt like crap all the time.

So as with everything else in life, you can't afford to leave it to the experts, Yes, you have to be your own doctor, your own lawyer sometimes, your own scientist (especially when it comes to GMO), and on and on ..... I can't imagine being a head in the sand kind of person. Sure, it gets us riled up, but on some level we do effect change.

Our experiences parallel each other, dear Shroom!

My 3 years of research kept bringing me to this site as well! Almost everything wrong in me was explained right here.

If I were not my own best advocate, I do not know what would have happened to me.

The sad part is, my PC doctor's own children have celiac and he could not see all my symptoms as giant red flags and I wandered from specialist to specialist for 3 years, even consulting alternative med professionals and a functional med MD out of desperation. Spent thousands and thousands on tests, supplements, therapies-- to no avail. How could they work? The gluten was the underlying problem and my blood tests were NEG. I was even encouraged to keep eating it, by the gastroenterologist's Nurse practitioner.... :blink:

He feels pretty bad about that, I think. Granted, I did have a LOT of stuff going on and many of my test results were "normal" except low B-12, which he had me supplement starting back in 2007. That was the beginning of my decline. And perhaps, the first red flag he missed....

I bring my concerns to him now and he is happy to follow MY lead. I even bring him copies of the latest research and he accepts them gracefully. I am too tired to start over with a new doctor, so he'll do whatever I ask willingly.

I hope that addressing the low folate is the final piece of the puzzle. Everything else has been checked and re-checked....fingers crossed!

Thanks for your thoughts. They keep me encouraged! :)

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      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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    • rei.b
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      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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