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Low Iron Level With High B12 Level


Golden Girl

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Golden Girl Rookie

My iron level is low but I have a high B12 level. I don't have the actual numbers yet from the Dr. but I have started liquid iron Florivital with orange juice and I have been eating more foods with iron but I am still feeling drained, depressed and not sleeping well. I have been trying to stay away from sugar and grains using coconut flour and almond flour and no dairy. I do have to have coffee in the morning so I get moving. I am on a leave of absence from work because I have been so depressed and not able to concentrate (brain fog). I also have bloating and I am very irritable. I was diagnosed with Celiac Disease 3 years ago I had 3 mini strokes before the diagnosis. Could some of my issues be related to the mini strokes? Or what could I eat to make me have more energy and get my focus back? Any information would be helpful, I'm not sure my Dr. is very knowledgeable about Celiac. I have been thinking maybe it could be systematic Candida but my GI Dr. said no that it would have been seen when they did the upper GI. I desperately need help and want to feel better.


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AVR1962 Collaborator

I would definately ask to see your lab results. I question the high B12.....is it high as in normal range high or hyper? That could make you sick there if your B12 is out of normal range but the question would then be, why is it that high?

crimsonviolet Apprentice

I'd look into fructose malabsorption or SIBO (small intestinal bacterial overgrowth.) A hallmark seems to be low iron and high b12, and the bloating and fatigue fit with the typical symptoms.

Bubba's Mom Enthusiast

I have low iron and high B12 as well. I thought it odd, because so many of us are low on B12?

Let us know if they find the cause of your symptoms?

ravenwoodglass Mentor

May not be the case but are you taking a vitamin with folate? From what I have read (sorry don't have time to find the link) that can cause falsely high B12 readings.

frieze Community Regular

the direct testing for B12 is questionable. Get tested for methylmalonic acid and homocysteine. Check out Same'

Golden Girl Rookie

My iron level is low but I have a high B12 level. I don't have the actual numbers yet from the Dr. but I have started liquid iron Florivital with orange juice and I have been eating more foods with iron but I am still feeling drained, depressed and not sleeping well. I have been trying to stay away from sugar and grains using coconut flour and almond flour and no dairy. I do have to have coffee in the morning so I get moving. I am on a leave of absence from work because I have been so depressed and not able to concentrate (brain fog). I also have bloating and I am very irritable. I was diagnosed with Celiac Disease 3 years ago I had 3 mini strokes before the diagnosis. Could some of my issues be related to the mini strokes? Or what could I eat to make me have more energy and get my focus back? Any information would be helpful, I'm not sure my Dr. is very knowledgeable about Celiac. I have been thinking maybe it could be systematic Candida but my GI Dr. said no that it would have been seen when they did the upper GI. I desperately need help and want to feel better.

I called my Dr. to get my lab results:

iron 47

B12 1263

T4 Normal

TSH .27

I am not sure what the actual numbers should be.


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Ginger7 Rookie

Also note that b12 is absorbed in the latter part of intestine, the terminal ileum so one possible idea to throw out there is that celiac has caused damage in the duodenum or first part of intestine causing the low iron. The latter part of the intestine, terminal ileum may not be damaged and hence b12 is not low. What is the range of b12 given? Seems like that number might be right on the upper border or just over.

Also have you have ferritin tested which indicates stores of iron? Plus I agree with other post around b12 tests. Have you had endoscopy/colonoscopy done?

Golden Girl Rookie

Also note that b12 is absorbed in the latter part of intestine, the terminal ileum so one possible idea to throw out there is that celiac has caused damage in the duodenum or first part of intestine causing the low iron. The latter part of the intestine, terminal ileum may not be damaged and hence b12 is not low. What is the range of b12 given? Seems like that number might be right on the upper border or just over.

Also have you have ferritin tested which indicates stores of iron? Plus I agree with other post around b12 tests. Have you had endoscopy/colonoscopy done?

I have had 2 endoscopies and 1 colonoscopy within the last 3 years. I forgot to mention I did go off of Prilosec I have been taking this over 2 years. I did read on a website about low stomach acid which can cause you to not absorb iron, I am going to mention this to my Dr. but I did start taking 3 times a day Betaine HCI. Today is my 2nd day.

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      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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