Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 And Mineral Deficiencies


JodiC

Recommended Posts

JodiC Apprentice

Well I went and had my levels checked on some common vitamins. (Internal Medicine Dr ordered these)

Vitamin D - severely low (muscle/bone pain, weight gain, fatigue etc) 50000 IU per wk over 8wks

Iron (all levels) - severely low (fatigue, pain, weakness, near fainting etc) will get iron inffusions IV

Vitamin C - severely low (rare) (heart problems, stroke (severe headaches), eye problems, weakness, scurvy (diagnosed) etc etc etc. ) going to Mayo clinic as it cannot be treated where I live.

Calcium - Okay

Vitamin B12 - okay

Phosphorous - okay

Folate - okay

Thamin - still waiting for results

Despite the gluten free diet malabsorption seems to be the ongoing problem. My Dr here does not know how to treat such deficiencies so back to Mayo I go. I can't believe I have diagnosed with Scurvy!! This does however explain the heart and head problems. Hopefully this time the proper treatments will be done. I never knew this disease could cause these kind of problems. She said that because I went undiagnosed for so long that my intestines can't get the nutrients from any of the food I am eating even though I live on veggies, fruit, and lean meats. We as celiacs probably eat better than most people we know and we are the ones who have deficiencies. Go figure. I don't even know what to expect anymore but will not leave Mayo without all the answers. I am tired of being nice. I had no idea and after months of losing my life to these symptoms I want answers. Dr said it wouldn't have mattered if I had taken tons of vitamins a day they wouldn't have done a thing. (due to the disease) On top of all of this my pancreas and gallbladder are starting to shut down.

Anyway, I hope this might help some of you out there who are still struggling with "unresolved Celiac despite Gluten free diet"


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



Celiac.com Sponsor (A8-M):



JoeB Apprentice

I can sympathize with you. I've been gluten-free for more than two years and have generally been feeling a lot better than I have in years, except for occassional minor DH symptoms. I just went for a check-up and found that now I have a severe vitamin K malabsorption issue (I was previously diagnosed with osterperosis, but it looks like my calcium absorption is normal now). Everything else is fine. The Iga and Igt tests came back negative. Now the GI is trying to figure out why I'm having this problem.

It is frustrating!

Ursa Major Collaborator

Yikes, scurvy! I imagine you'll need to get vitamin C intravenously as well, until your intestines are healed enough to absorb nutrients again.

Try taking cod liver oil (I take the Carlson brand, which doesn't taste bad) for vitamin D and A and omega 3 fatty acids. My vitamin D was very low 1 1/2 years ago, too, and I had to cut back on it, because my vitamin D was getting too high (which can cause problems, too).

Regular vitamins are obviously useless right now (I couldn't take any for six months after starting the gluten-free diet, they would make me sick). But would liquid vitamins work?

little d Enthusiast

Ok question, If I start taking vitamins will those affect the levels or will they stay the same. I am questioning this because I am going June 11 to my Ortho doc for my fx foot that is slow to heal my 3x to brake the same foot and I am getting a bone density test to see if I may have any early signs of ostero anything. I do have joint or bone pain quite often. So I was just wondering if taking vitamins will affect the scan or any blood work when I go for a physical at my primary doc, which he will order blood work and all.

Donna

JodiC Apprentice

All of this is happening despite having healed intentines. My last biopsy came back okay according to the GI dr. I am already taking a vita D supplement although now it is prescription and at very high doses. Taking vitamins will affect the results because if you need them you need them. I was taking all the necessary vitamins and am still showing up with severly low levels. If you take the vitamins you need and start feeling better than I wouldn't wait for bloodwork results unless your dr asks you to. What I don't understand is how can I be eating healthier than I ever have in my life and end up with worsening health??? Hopefully they can explain why my body is not absorping the nutrients I am eating. I am lucky that I don't have problems with any other food except gluten so I can still eat corn, soy, dairy, meats etc. I have a pretty well balanced diet. (In my opinion). My friends say they would die if they had to eat so healthy. None of it makes any sense to me. I have spent enough money in the last few years to have completly paid for my house. It is so frustrating. I still wonder also if I have celiac since my IGA was negative. The only positive was IGG (barely). I don't know...there are so many questions. I wonder if the medical profession even knows what they are dealing with or if we have become human test subjects. My biggest fear is not being here to watch my kids grow up so I keep plugging along looking for answers. Anyway I will keep all posted and thanks for the replies.

Jodi

Ursa Major Collaborator

Jodi, are you sure you aren't intolerant to dairy and soy? If your villi are healed, it is a mystery to me why you aren't absorbing nutrients. I hope you get some answers soon.

The reason I mentioned cod liver oil is, that it is easily absorbed and might work better than the vitamin D supplements.

It just occurred to me that vitamin C is a fat soluble vitamin. Are you eating enough fat? You are supposed to take vitamin C along with eating something containing fat. So, taking cod liver oil at the same time as your vitamin C might work for bringing both your D and C up.

JodiC Apprentice

I think I eat enough fat? I am having problems with gallbladder and pancreas and have noticed bms are very different than when I get glutened. Like I said I eat alot of veggies and lean meats so maybe I am not eating enough. Though the fact I haven't lost anymore weight is frustrating. Also like I said I have been taking daily vitamins all along so was shocked to see the levels. the anemia I can understand since I have been low on iron most of my life and now with menopause it makes the matter more of a problem. Will have to wait and see what the next round of appts with dr does for me. At least before I went gluten free all I ever had to deal with was D. Now it seems to be ballooning into a systemic thing.


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator
I think I eat enough fat? I am having problems with gallbladder and pancreas and have noticed bms are very different than when I get glutened. Like I said I eat alot of veggies and lean meats so maybe I am not eating enough. Though the fact I haven't lost anymore weight is frustrating. Also like I said I have been taking daily vitamins all along so was shocked to see the levels. the anemia I can understand since I have been low on iron most of my life and now with menopause it makes the matter more of a problem. Will have to wait and see what the next round of appts with dr does for me. At least before I went gluten free all I ever had to deal with was D. Now it seems to be ballooning into a systemic thing.

Jodi, it isn't fat that makes you fat, but too many carbs and sugars. In fact, eating enough healthy fats will help you lose weight! Try using non-hydrogenated, cold pressed coconut oil. It is a healthy saturated fat, that is known to cause weight to regulate to normal (fat people lose, skinny people gain weight). The same goes for cod liver oil.

neesee Apprentice

Actually, vitamin C is water soluble along with B vitamins. Vitamins A,D,E and K are the fat soluble vitamins.

Marlene Contributor

Have you looked into liver dysfunction? Try googling it. Apparently if your liver is not functioning properly, you will have problems absorbing vitamins and nutrients - especially the fat soluble ones. Lots of people with gluten intolerance have dysfunctional livers. Unfortunately, routine liver tests won't always show that there is a problem.

Hope this helps,

Marlene

  • 9 months later...
mftnchn Explorer

I'm bumping up this thread to see if anyone can add any further insights.

After 11 months gluten-free, my vitamins, minerals and amino acids are quite low (not all but many of them), although my fat malabsorption test is now normal (Enterolab). I am taking tons of supplements but am worried that I won't absorb those either.

home-based-mom Contributor

Just a couple of thoughts -

I would think liquid vitamins would absorb more readily if for no other reason than they have the "head start" so to speak of already being liquid.

Also, I may be confused about Vitamin D. I thought the body made its own when exposed to sunlight. I realize that in the winter in places like Minnesota, NE China and Canada where the winter days are short and exposing your skin to sunlight could get you a good case of frostbite, that might not work too well, but overall in general in the rest of the world and/or during warmer months, should there not ever be a problem with Vitamin D???

TestyTommy Rookie

Vitamin D deficiencies are extremely common. The only dietary source is milk (not cheese or other dairy -- just milk ) to which vitamin d is added -- it doesn't occur there naturally. And in N. Europe and the northern US (eg, Chicago, Boston, NY and any where north of them), it is impossible to get enough sunlight during the winter (September - May) to make any Vitamin D, because of the angle of the sun's rays. Most everyone in those parts of the world should be taking a vitamin d supplement.

Search vitamin d deficiency and I think you'll be surprised at what you find.

AliB Enthusiast

I agree with Marlene, liver dysfunction is often a big problem especially for those of us who are overweight - that in itself can be an indicator of a sluggish liver, and I am pretty sure that has been my problem for years as my hair has gone from being lovely and thick and wavy to very thin and lifeless (and grey!).

Back last year my hair was falling out something dreadful. I was having stomach problems after my doctor changed my diabetic medication and I now think that triggered either Celiac or at the very least, extreme gluten intolerance. I knew that hair loss can be linked to liver function (we had a friend who had a liver fluke and all his hair fell out!), so I took some Milk Thistle capsules for a few weeks, as they are a good liver tonic, plus some good multivits.

Within a few weeks my hair had stopped falling out. I also believe that the Milk Thistle cleared out my gall-bladder as I noticed something in the loo one day that looked like peas, but I hadn't eaten any! I flushed it and thought no more about it, but when the stomach got so bad and an Ultrasound was done, it was empty! Not one gall-stone! Considering I am 51, I reckon that's quite a rare thing!

Then, about 2 weeks after I started gluten-free, I suddenly felt my liver clear out. It was a bit disconcerting to feel stiff trickling down the tubes inside and it was pretty sore for a couple of days but soon recovered. I probably dumped a load more stones, grit and rubbish!

Now after 2 months gluten-free, dairy free and very low carb and sugar, my hair is still good, I seem to be absorbing pretty well - I do take a multivit everyday and one Milk Thistle to keep the support up. My energy is coming back, I am sleeping better generally and can now tolerate a few foods that my stomach couldn't cope with a few weeks ago. I was getting a dreadful backache nearly every time I ate anything but that has improved a lot now too.

The weight isn't moving yet, but I am pretty confident it will, once my body has sorted itself out.

Lizz7711 Apprentice
All of this is happening despite having healed intentines. My last biopsy came back okay according to the GI dr. I am already taking a vita D supplement although now it is prescription and at very high doses. Taking vitamins will affect the results because if you need them you need them. I was taking all the necessary vitamins and am still showing up with severly low levels. If you take the vitamins you need and start feeling better than I wouldn't wait for bloodwork results unless your dr asks you to. What I don't understand is how can I be eating healthier than I ever have in my life and end up with worsening health??? Hopefully they can explain why my body is not absorping the nutrients I am eating. I am lucky that I don't have problems with any other food except gluten so I can still eat corn, soy, dairy, meats etc. I have a pretty well balanced diet. (In my opinion). My friends say they would die if they had to eat so healthy. None of it makes any sense to me. I have spent enough money in the last few years to have completly paid for my house. It is so frustrating. I still wonder also if I have celiac since my IGA was negative. The only positive was IGG (barely). I don't know...there are so many questions. I wonder if the medical profession even knows what they are dealing with or if we have become human test subjects. My biggest fear is not being here to watch my kids grow up so I keep plugging along looking for answers. Anyway I will keep all posted and thanks for the replies.

Jodi

Don't expect Mayo to give you answers LOL. My mom spent a week there with diarrhea that caused her to go to 86 pounds, they told her she had ulcerative colitis and told her to take pepto bismol. two years later she died of adenocarcinoma of unknown origin (my guess is small intestine). She was never diagnosed celiac...but I got it from somehwere (DQ2 gene), and it's not my dad...so, ya think Mayo coulda run a dang gliadin test????????????? sorry but they're all f---in idiots. (and i'm a Christian and don't like to swear but I can' t help it right now!, sorry) I truly hope you will have a better experience, but the bottom line is you have to do your own research and dont' rely on the "experts" to solve your health problems, because they've been trained under a model that just doen'st work for true healing (crisis management of symptoms rather than HEALTH care).

Have you had a test of intestinal permeability? Usually only holistic docs are likely to do it I think...it tests for leaky gut syndrome. I am only guessing, but it's possible for the GI doc to biopsy and say the microvilli are healed...but miss the fact that the junctures are not tight...meaning there can be tiny holes in your intestine allowing undigested food/proteins/etc. to get out and into your blood stream and cause malabsorption....also low stomach acid can cause problems so i'd ask for a test of that as well.

bonne chance,

Liz

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,180
    • Most Online (within 30 mins)
      7,748

    Julie A Cook
    Newest Member
    Julie A Cook
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      @Rogol72, dermatitis herpetiformis occurs in a minority of celiac patients and if the OP hasn't developed it yet I doubt it will show up in the future. I think it unwise to use a scare tactic that probably won't materialize in the OP's experience. It has a good chance of backfiring and having the opposite effect.
    • Rogol72
      Hi @trents, You're correct. The OP mentioned fatigue and vitamin deficiencies as the only symptoms at the time of diagnosis. Since the family are not taking him/her seriously and find them to be too fussy, I suggested showing them pictures of dermatitis herpetiformis as one of the consequences of not taking the gluten-free diet seriously ... would make life easier for him/her, and the family might begin to take his/her strict gluten-free diet more seriously. A picture says a thousand words and the shock factor of dermatitis herpetiformis blisters might have the desired effect. The OP did say ... "How do you deal with people close to you who just refuse to understand? Are there any resources anyone could recommend for families that are short and easy to read?".  @sillyyak52, It might also help mentioning to your family that Coeliac Disease is genetic and runs in families. Any one of them could develop it in the future if they have the HLA DQ 2.5 gene. Here's a Mayo Clinic study calling for screening of family members of Coeliacs ... https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-celiac-disease-screening-for-family-members/ https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-study-calls-for-screening-of-family-members-of-celiac-disease-patients/ I got glutened a few months ago because I missed the may contains statement on a tub of red pesto. It was my own fault but it happens.
    • peg
      Thank you, Scott!  This is just what I needed.  Appreciate your site very much and all of your time and energy that goes into it! Kind Regards, Peg
    • Hopeful1950
      Oh yes.  I would never recommend taking it for an extended period of time.  When 70% of my body was covered in blistering itchy sores, an amazing doctor prescribed it diagnostically because I was unwilling to do a gluten challenge after already going strictly gluten-free in desperation after 10 years of suffering and being poo pooed by dermatologist after dermatologist. The fact that it stopped the itch and mostly cleared the rash after about 2 months was diagnostic for him.  I stopped it and have remained strictly gluten-free with very few flares since that time (over 10 years ago).  So the fact that it cleared the rash was diagnostic for me.     
    • Scott Adams
      The link is in my signature block, but is:  
×
×
  • Create New...