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

Vitamin Deficiency


sparkles

Recommended Posts

sparkles Contributor

Anyone out there experience vitamin deficiency???? When I was first diagnosed with celiac disease, my B12 was really low so I started shots. I quit after a year because I moved and changed docs. I need to add that I also have diabetis and diabetic neuropathy. I saw a new neurologist last fall and she felt that I also might have dietary neuropathy (new to me), checked the vitamin levels that new doc had drawn and wondered why I was not back on the shots.....so went back on shots and then in January on gluten-free vitamins to get the B complex vitamins up to normal range. In Dec, I started having pain and numbness in my tongue, Ear-Nose-Throat doc thought that this might also be related to vitamin B complex deficiency. I have been on B12 shots since Oct and vitamins since January and the only difference I am noticing is that my urine is now a neon yellow. According to the nurse this is from too much B complex in my system. I am wondering since nature of the celiac disease is malabsorbtion, are the B12 shots and other vitamins just going through me. The doc felt that the shots would be absorbed since they are shot right into body but I am wondering about the other vitamins. Also I have tried really hard to follow celiac diet for 4 years and have not knowingly cheated. I felt really great right after going gluten-free but lately old symptoms of headaches, depression, stomach pain, more neuropathy problems are returning and new problems like skin rashes and tongue pain and benign mass on my thyroid have emerged..... I hate to blame everything on celiac disease but it all seems so inter-related. Anyone else experience anything like this??????


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



Celiac.com Sponsor (A8-M):



let-the -sun-in Newbie

Hi I too have neuropathy and i was taking 1000mcs of b12 every day and mulity vits . i was hoping that with the increase that it would go but it didnt, after 5 months i just take the multi vit now. i dont think once you get neuropathy that it goes away, i wish it did it drives me crazy at times. if you are having the shots then you should be absorbing it , if you think the you might not be absorbng the others maybe you could get it in liquid form instead. so it gets into your system quicker. good luck

Jen H Contributor

Hi,

I had some blood tests for a physical shortly after my diagnosis and my calcium, vitamin D, and magnesium levels were all low. Since then I found out I have osteoporosis and take supplements for it.

bradshank Newbie

howdy,

i've been wrestling with vitamin deficiency too- i'm now taking:

iron: bisglycinate 300 mg/day po (not constipating like ferrous)

folic acid 5 to 10 mg/day po

calcium 5 to 10 g/day

standard multivitamin

when i first saw the dosages i was intimidated, but the info comes from Merck?

Open Original Shared Link

so, i tried what they recommended, BUT SWITCHED the iron from ferrous to bisglycinate (Solgar Vitamin and Herb). this helped the irritation from the ferrous iron.

anyway, i hope this helps?

b

2tired Apprentice
Hi,

I had some blood tests for a physical shortly after my diagnosis and my calcium, vitamin D, and magnesium levels were all low. Since then I found out I have osteoporosis and take supplements for it.

My vitamin D level has been way too low for almost a year now. I wasn't diagnosed with Celiacs until Nov. 05. I have been on 50,000 units of Vit. D weekly until this mth and my dr. dropped it to once mthly. My body is still not absorbing it. My dr. is still not sure what to do.

beelzebubble Contributor
My vitamin D level has been way too low for almost a year now. I wasn't diagnosed with Celiacs until Nov. 05. I have been on 50,000 units of Vit. D weekly until this mth and my dr. dropped it to once mthly. My body is still not absorbing it. My dr. is still not sure what to do.

try spending half an hour in the sun, maybe?

elisabet Contributor
Anyone out there experience vitamin deficiency???? When I was first diagnosed with celiac disease, my B12 was really low so I started shots. I quit after a year because I moved and changed docs. I need to add that I also have diabetis and diabetic neuropathy. I saw a new neurologist last fall and she felt that I also might have dietary neuropathy (new to me), checked the vitamin levels that new doc had drawn and wondered why I was not back on the shots.....so went back on shots and then in January on gluten-free vitamins to get the B complex vitamins up to normal range. In Dec, I started having pain and numbness in my tongue, Ear-Nose-Throat doc thought that this might also be related to vitamin B complex deficiency. I have been on B12 shots since Oct and vitamins since January and the only difference I am noticing is that my urine is now a neon yellow. According to the nurse this is from too much B complex in my system. I am wondering since nature of the celiac disease is malabsorbtion, are the B12 shots and other vitamins just going through me. The doc felt that the shots would be absorbed since they are shot right into body but I am wondering about the other vitamins. Also I have tried really hard to follow celiac diet for 4 years and have not knowingly cheated. I felt really great right after going gluten-free but lately old symptoms of headaches, depression, stomach pain, more neuropathy problems are returning and new problems like skin rashes and tongue pain and benign mass on my thyroid have emerged..... I hate to blame everything on celiac disease but it all seems so inter-related. Anyone else experience anything like this??????

How is your folat after taking b-complex,I mean does she take any blood test to see how much of the vitamins enter your blood stream?


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor
Hi I too have neuropathy and i was taking 1000mcs of b12 every day and mulity vits . i was hoping that with the increase that it would go but it didnt, after 5 months i just take the multi vit now. i dont think once you get neuropathy that it goes away, i wish it did it drives me crazy at times.

Was the B12 you were taking sublingual? This is absorbed by the mucous membranes and bypasses the intestines completely. Don't loose hope with the neuropathies, if they were caused by the celiac they most likely will heal, it just takes a long time. Welll over 6 months gluten-free for me, possibly shorter or longer time for others. Celiac is not the only cause for neuropathies, diabetes and excessive alcohol intake are just a couple other things that will cause them. The neuropathies are also one of the first signs I have been glutened, have you checked everything for gluten? Cosmetics, toiletries, pet foods, art supplies, cleaning products, toasters? Do you consume grain based distilled alcohols? Although 'okay' (ie. non-reactive) for some of us for others a gluten reaction will still occur.

let-the -sun-in Newbie
Was the B12 you were taking sublingual? This is absorbed by the mucous membranes and bypasses the intestines completely. Don't loose hope with the neuropathies, if they were caused by the celiac they most likely will heal, it just takes a long time. Welll over 6 months gluten-free for me, possibly shorter or longer time for others. Celiac is not the only cause for neuropathies, diabetes and excessive alcohol intake are just a couple other things that will cause them. The neuropathies are also one of the first signs I have been glutened, have you checked everything for gluten? Cosmetics, toiletries, pet foods, art supplies, cleaning products, toasters? Do you consume grain based distilled alcohols? Although 'okay' (ie. non-reactive) for some of us for others a gluten reaction will still occur.

hi ravenwoodglass

I was taking the sublingual and i take the time release ones too, but on my last blood test all my levels where right. I watch everything i put in my mouth i dont eat it unless i feel 100% sure, i cook at home, also i do notice when i have an occasional glass of wine maybe once a week it does increase it alot. i dont consume any other type of alcohols. As for cleaning products am not sure , my tolities are all neurtrigena and also my make up. my deodrant says potatoe starch so i know thats safe. i do have dogs and there is deffinatly gluten but i must wash my hands 100 times a day, its become an obsession that i dont get glutened i wont even let my husband touch any of my food because twice i have caught him handleing bread then go touch some of mine. so i dont know if i am getting any gluten . I was hoping i was on top of it all maybe am not then if i still suffer with it, i know that its not as agressive as it used to be but i still have it alot. The more physical i am the more it gets agressive i thought i would be stuck with it but if theys hope i will be so pleased . thanks for your responce

ravenwoodglass Mentor
hi ravenwoodglass

As for cleaning products am not sure , my tolities are all neurtrigena and also my make up.

I actually check cleaning products, especially dish soap. I use either Dawn or Dermassage and only arm and hammer soaps and dryer sheets. You may want to call and ask about each Neutrogenia product, I called about one of their shampoos and some are safe but many are not. Some have posted about a few of their products so a search might bring up something but I know I feel better if I call myself. It seems so daunting at times. It takes a long time for some of us to heal and I hope this gets better for you as time goes by.

Jen H Contributor

My vitamin D level has been way too low for almost a year now. I wasn't diagnosed with Celiacs until Nov. 05. I have been on 50,000 units of Vit. D weekly until this mth and my dr. dropped it to once mthly. My body is still not absorbing it. My dr. is still not sure what to do.

My nutritionist suggested that I start drinking Tropicana with Calcium and Vitamin D. She said the vitamin D helps with absorbing calcium. I'm seeing an endocrinologist about my osteoporosis in 2 weeks and will ask him if my Vitamin D levels have normalized. If I get any advice, I'll share it with you.

happy4dolphins Enthusiast

HI, I too have been vit D deff since Nov. 2005 and have been taking 50,000 ius of vit d once a week. I think it also depends on where you live. It's not un common to be vit d deff if you are living in the upper portions of the US/Candada, etc.

Nicole

  • 3 weeks later...
ms-sillyak-screwed Enthusiast

Vitamin B-12, Folic Acid and Pantothenic Acid shots have helped me a lot with many of my ailments. I'm going in for another shot tomorrow -- once a week is good for me.

Robix Apprentice

I get the vitamin b-cocktail shots - goes directly into your muscles, then into your bloodstream also by-passing your intestines. I keep reading about people doing these weekly - please check with your doctors.

I have been doing these for 14 years now, about every 3 to 4 weeks and I try to time these with onset of my period - find this is what works best for me and my levels test adequately this way. My boyfriends (haven't had that many, but in 14 years more than a few!!!) come to the doctor to learn how to administer then I get them at home and don't have to go to the doctor for my shots.

However the weekly dosage is only supposed to last until your levels come up, then only every 3 to 4 weeks to stabilize. It is possible to overdose on B12 - so please check with your doctors to make sure you are not getting too much - too much B12 can make you sicker. When I was particularly exhausted lately (ta-da! Can you say Celiac?!!!) I asked my pharmacist if it was possible that the shots were not working and could I do more, and he said absolutedly NOT and that taking more would be dangerous (REALLY trust my pharmacist, more than any doctor) impossible for a shot of B12 not to hit bloodstream and my exhaustion was no doubt due to something else (TA-DA! Celiac!).

I also have too many digestive problems to take iron supplements in pill form (lets not even go there!) so I take Floradix (an extract of iron from prunes) and its more expensive but very easy to take and no affect on digestion (very small dose so won't its not like drinking prune juice).

Good luck to all of you - health and heart,

Archived

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

  • 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. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      15

      My only proof

    2. - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

    3. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,420
    • Most Online (within 30 mins)
      7,748

    maggie23
    Newest Member
    maggie23
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Mari
      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @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!
×
×
  • 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.