Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

B12 Deficiency Anemia?

HopefulMama23

Recommended Posts

HopefulMama23 Explorer
HopefulMama23
Posted

Hi all- I have been pouring over my test results, determined to figure out what has caused my latest bouts of symptoms.

My history:

After my 3rd child was born, I developed chronic D, lost a lot of weight, became very depressed and tired, and lost a TON of hair. I was tested for celiacs via blood test and the result was negative, but I have it in my family, so I opted to go on a gluten-free diet regardless. The diet helped, and things SLOWLY got better, with the fatigue the last thing to go.

But- recently I have had the seemingly opposite reaction, anxiety, rapid heartbeat, brain fog, insomnia, diarrhea, weight loss and further hair loss. I was thinking thyroid, so I pulled out my test results from 4 months ago to re-look at everything with fresh eyes.

In those results, my Free T4, T3, and TSH are all within "normal", but are all at absolute bottom of normal scale.

Here is what caught my attention- my MCH and MCV are both high- off the recommended scale. I looked that up and apparently it can be indicitive of a B12 deficiency. I looked THAT up- and the symptoms match mine exactly.

It also looks like a B12 deficiency can be pretty common with celiac's.

Anyone have any experience with this? Any advice? Any idea why 5 months into my gluten-free diet these symptoms would surface?

The funny thing is- I ran right out last night and bought a B12 supplement and took that last night with a Folic acid supplement (this is what I read to do). Maybe it was in my head, but I swear I feel better today.

Am I crazy?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


sb2178 Enthusiast
sb2178
Posted

B12 deficiency typically takes a long time to surface-- your liver stores quite a lot of it. Vegans, for example, can go 10 years (often) before symptoms develop. Elderly folks whose stomachs stop producing enough acid to break it off the proteins it's connected to also often don't develop symptoms for 10 to 15 years. It's probably something that had been developing for quite a long time, and just coincided with the gluten-free diet.

In other suggestions, I'd check with your MD to see if they have previous bloodwork on file and can review it. One of those is genetic... don't remember which... so they can see how much it changed. Also, you may need shots if your intestines are not absorbing it. Might be a good idea to follow up on those symptoms too, just in case it is a thyroid thing that shifted enough to make it recognizable in bloodwork.

Liver, by the way, is an excellent source of B12.

laura4669 Apprentice
laura4669
Posted

You might also check into other food intolerances, which can cause some of your most recent symptoms. I found out I was intolerant to most other grains, as well as dairy, potatoes and chocolate!

I also take B12, however, I need to take it sublingually since I don't seem to absorb it through my gut. As the previous poster suggested, you might check into whether you need something other than the capsules.

Judy3 Contributor
Judy3
Posted

You might also check into other food intolerances, which can cause some of your most recent symptoms. I found out I was intolerant to most other grains, as well as dairy, potatoes and chocolate!

I also take B12, however, I need to take it sublingually since I don't seem to absorb it through my gut. As the previous poster suggested, you might check into whether you need something other than the capsules.

I do the same sublingual B12 every morning. If I forget it, I get the sores on the corners of my mouth by the end of the day :(

SoyBoy Rookie
SoyBoy
Posted

With a B12 deficiency, it takes very little time to start feeling the effects of supplementation. So, it is possible that it is not

Debbie B in MD Explorer
Debbie B in MD
Posted

So what should your B12 be? I don't have my report right in from of me, but I know mine was well at the low end of a very wide range. I know there is a reference range which I did fall into, but what about optimal??

mushroom Proficient
mushroom
Posted

I personally found that my optimal is mid-range - mine was at the lowest end of normal, my MCV had been high for years with no alarm bells rung for doc, and my folate was also super low but still "normal". I felt improvement right away with B12 shots (am allergic to something in the sublinguals) and a B complex, along with a total 800 mg folate.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


SoyBoy Rookie
SoyBoy
Posted

So what should your B12 be? I don't have my report right in from of me, but I know mine was well at the low end of a very wide range. I know there is a reference range which I did fall into, but what about optimal??

Maybe not the best site to reference, but here you go...

Open Original Shared Link

B-12 lab test: Measures an essential vitamin, B12, which can be low in hypothyroid patients due to low stomach acid. You are looking for an optimal B12 lab result at the top of the range. It is NOT optimal to simply be

HopefulMama23 Explorer
HopefulMama23
Posted
  • Author

So I took my first B12 supplement Monday night before bed- and Tuesday was the best day I've had in a while- more energy, normal hair loss (not coming out like crazy like it has been doing), less anxiety, no trouble falling asleep, KP on arms was better. I thought I had found my answer!!

BUT- I took it last night before bed also and this morning was just as bad if not worse as I was before- hair loss in clumps, anxiety, fatigue, KP is back.

My test results do seem to show an issue- so I will continue to take it. Any thoughts on why I had a good day and then a bad day again? Is this just to torture me every time I seem to find hope?

Jestgar Rising Star
Jestgar
Posted

I take a B complex just for an energy boost (instead of coffee in the afternoon). It's one of those vitamins that it's hard to overdose on.

mommida Enthusiast
mommida
Posted

It might actually be Pernicious Anemia, which is associated with Celiac. The damaged gut lining does not have the intrinsic factor to process B12.

Find out your actual test results on your test and the ranges of "normal".

angel9165 Newbie
angel9165
Posted

When diagnosed last fall w/ Celiac, my GI doc ordered B12 shots for me every other week for 6 months and now I go monthly. As far as my primary physician is concerned, this will be a forever thing for me...monthly B12 shots. Oddly, it was never mentioned that I should take a supplement. For me, I'd rather do the shot. :)

modiddly16 Enthusiast
modiddly16
Posted

I get b12 shots and have been for the last 5 months, I've been a celiac for over 7 years and it took a long time for it to finally get noticed, based on my symptoms I was still having a lot of celiac seeming reactions, but following the strict diet. In the 5 months, I've seen a boost in my energy and less pep in my step to the bathroom :) . "Normal" levels are between 300-900 and they like you to be somewhere in the middle. My level was 150, which my doctor called freakishly low. Even after 5 months of shots, I'm still only to 250, so my body is taking a bit longer!

Chiana Apprentice
Chiana
Posted

The current recommended guidelines are 2500 mcg per day, if you suffer from pernicious anemia and take oral supplements. Personally, I think that the shot once a month is much much more effective than the daily doses...I've been getting them for years now.

modiddly16 Enthusiast
modiddly16
Posted

scratch that! apparently I'm at 209...haha the Dr. just called.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      0

      Celiac Diner Sues Olive Garden After Gluten Mix-Up Leads to Medical Emergency (+Video)

    2. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed. Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    3. knitty kitty
      - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

      Hello, @Jordan Carlson, So glad you're feeling better. Tecta is a proton pump inhibitor. PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12. Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the...
    4. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1. There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine. In Thiamine deficiency, the body...
    5. Scott Adams
      0

      Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,038
    • Most Online (within 30 mins)
      7,748
    Val70
    Newest Member
    Val70
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
      Positive biopsy

      By pothosqueen · Posted

      26F!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.