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

Nutrient Deficiencies?


sunnybabi1986

Recommended Posts

sunnybabi1986 Contributor

I went on a gluten free diet 4 weeks ago and have been very diligent, making sure that nothing is cross-contaminated. My stomach felt so much better within 2 weeks, but my exhaustion didn't change at all. Now, 4 weeks later, I'm actually getting more exhausted. When I wake up in the morning, I'm so exhausted, I feel like I need to go straight back to bed. Unfortunately, I have a 2 year old son to take care of for 10 hrs/day while my husband is at work, so things aren't going so well. My energy level changes from day to day usually, but for 4 days now, it's been dropping consistently. I feel AWFUL.

I don't have insurance right now and I'm currently applying for it, so I have to be very careful what I do. If the company finds out I'm having any tests run, they will likely deny me. I can go to the health department and pay in cash to stay safe, but I'm not sure what tests I should have run. Obviously, iron levels would be a definite, but what other deficiencies are common with gluten intolerance?

I'm afraid I'm not getting enough carbs, as my primary carbs right now are potatoes and rice, and I only eat them every other day. I'm getting very tired of both of them and I don't want to burn out on them so soon. I started taking a multivitamin a few days ago (gluten free, of course), but I know if I have deficiencies, it may take more than a multivitamin to get me back on track.

I'm currently waiting for my results from Enterolab, so I'll find out next week if I have a sensitivity to dairy.

Any suggestions?

Janie


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

Hi Janie, sorry you are feeling so awful. Yes, there are several levels that celiacs should have checked:

Obviously, as you say, ferritin (iron); also Vit. D, B12, folate, also thyroid (TSH, free T4 and free T3, and antibodies). These are the major ones to start with. I have no idea how much these tests cost if you have to pay out of pocket. It is always a shame to be between insurances. Best of luck to you.

YoloGx Rookie

You might want to try going on either a paleo diet or a specific cabohydrate diet. It might be best to avoid the rice and potatoes, either one or both could be bothering you. You could substitute squash and other roots besides potatoes instead for the carbohydrates. It also might be helpful however to make your diet more low carbohydrate and thus emphasize the vegetables and fruits with some meat. Simple digestive enzymes might be a good idea too. I suggest something like Now's plant enzymes. And of course avoid all sugars...though fruit (not in excess! in case you have candida overgrowth too ) may be just fine for you.

Hope you are avoiding milk products since they often are a problem esp. at first. You could however try making 24 hour yogurt at home. Basically it is regular yogurt made with whole milk and then fermented someplace warm like an oven with a pilot light in it or a drop light inserted into the oven and turned on. The idea is to ferment it that long in order to get rid of all the lactose while at the same time increasing the probiotics.

Your body might also be detoxing, so give it time to recover... Its possible that a simple detox herb like dandelion root or milk thistle might help. Just make sure they are gluten free--thus no alcohol tinctures! The dry herbs are safest. I personally boil up a brew. You can look it up online or even google it here where I have gone into detox herbs more thoroughly.

Please let me know if any of these suggestions help.

Bea

GottaSki Mentor

Mushroom already suggested the necessary blood work. Mine were personally low in B, D, K, Iron, Ferritin, Zinc and Copper upon Celiac Dx. I currently take Multi, Fish Oil, Calcium w/ D and B supplements - along with Malic Acid/Magnesium...

I too had major improvement of gastro issues within the first two months gluten-free, but my fatigue and achy/stiffness got MUCH worse over the past 8 months to the point I wasn't able to function more than 6 hours a day.

Most recently I was diagnosed with Fibromyalgia. I am finding some increase in my energy levels since I've started taking Malic Acid/Magnesium. I was already taking Magnesium after Celiac Dx, but have switched to the Malic/Mag combo and am able to exercise again :)

Nutrient testing is a great place to start.

Good Luck to you!

nu-to-no-glu Apprentice

I agree. It's a really good idea to have the test done. I've recently gotten my tests back and my dr made a chart of many different vitamins for me to take, as well as B12 injections. From what he explained, a multivitamin wouldn't provide the appropriate amount of supplements. He also stated that it could take a year before I feel 100 percent, so I needed to get started on them asap! I am still adding them 1 by 1 to my routine gradually.

It stinks you don't have insurance :( I truly understand how you feel...I have a 2 year old also, and know what fatigue is! The vitamins have helped so far...I'm almost 3 months gluten-free, and the fatigue is starting to lift gradually...good luck!

sunnybabi1986 Contributor

Okay, so I talked to my local health department and they said they could do some testing for me without a doctor's orders, since I'm uninsured right now and trying to figure this out on my own.

She asked me which vitamins/minerals I needed testing for. Add or subtract anything you see:

Iron

Vit D

B12

Folate

Vit K (?)

Zinc (?)

Copper (?)

Thyroid (I had these levels checked 6 months ago...all normal. Do I really need to test again?)

Anything else I should ask to be tested for, or do I need to shorten my list?

Thanks for all the help!!

Janie

YoloGx Rookie

Looks good to me--if they do check the thyroid have them check your t-3 levels--they often forget to do this. Could also check your adrenals. Also for me it was my B-1 that was insufficient, not the B-12; so if you can get them to check all your B's that might be helpful...


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



Celiac.com Sponsor (A8-M):



Alphawave Rookie
I went on a gluten free diet 4 weeks ago and have been very diligent, making sure that nothing is cross-contaminated. My stomach felt so much better within 2 weeks, but my exhaustion didn't change at all. Now, 4 weeks later, I'm actually getting more exhausted. When I wake up in the morning, I'm so exhausted, I feel like I need to go straight back to bed. Unfortunately, I have a 2 year old son to take care of for 10 hrs/day while my husband is at work, so things aren't going so well. My energy level changes from day to day usually, but for 4 days now, it's been dropping consistently. I feel AWFUL.

I don't have insurance right now and I'm currently applying for it, so I have to be very careful what I do. If the company finds out I'm having any tests run, they will likely deny me. I can go to the health department and pay in cash to stay safe, but I'm not sure what tests I should have run. Obviously, iron levels would be a definite, but what other deficiencies are common with gluten intolerance?

I'm afraid I'm not getting enough carbs, as my primary carbs right now are potatoes and rice, and I only eat them every other day. I'm getting very tired of both of them and I don't want to burn out on them so soon. I started taking a multivitamin a few days ago (gluten free, of course), but I know if I have deficiencies, it may take more than a multivitamin to get me back on track.

I'm currently waiting for my results from Enterolab, so I'll find out next week if I have a sensitivity to dairy.

Any suggestions?

Janie

A couple of things come to mind. Both my daughter and I (both celiacs) have low Vitamin D, B and we are both within 6 weeks of being diagnosed. I also had a very high CRP level (denotes inflammation). My joints and muscles HURT, just not as badly as before the gluten-free diet. BOTH of us had bad problems during the 2-3 week period following the gluten removal. I had a horrible yeast infection and broke out in boils, and felt enormously fatigued. My daughter had acne, etc. and tiredness. I am guessing (I am a nurse) that the toxins and dysbiosis (gut flora disturbed) were dying off and causing some of the symptoms. When my yeast overgrowth stopped, I felt like I had the flu or something (this is called Herxheimer reaction), the yeasties die of creating a bad toxin, until they all die off. The toxins dying off stress your liver and kidneys, making you feel sick. Remember, everyone has a different level of intestinal villa damage. If yours is severe, it could take a long time to feel healthy again. If yours was mild and you are young enough, then you will probably feel like "new" shortly.

I unfortunately have osteoporosis from this, and I cannot tolerate the osteo drugs like fosamax, etc. I am building back up with supplements and continuing with an organic based diet and purified water,(which I had been doing for years, anyway).

Hope that helps.

YoloGx Rookie
A couple of things come to mind. Both my daughter and I (both celiacs) have low Vitamin D, B and we are both within 6 weeks of being diagnosed. I also had a very high CRP level (denotes inflammation). My joints and muscles HURT, just not as badly as before the gluten-free diet. BOTH of us had bad problems during the 2-3 week period following the gluten removal. I had a horrible yeast infection and broke out in boils, and felt enormously fatigued. My daughter had acne, etc. and tiredness. I am guessing (I am a nurse) that the toxins and dysbiosis (gut flora disturbed) were dying off and causing some of the symptoms. When my yeast overgrowth stopped, I felt like I had the flu or something (this is called Herxheimer reaction), the yeasties die of creating a bad toxin, until they all die off. The toxins dying off stress your liver and kidneys, making you feel sick. Remember, everyone has a different level of intestinal villa damage. If yours is severe, it could take a long time to feel healthy again. If yours was mild and you are young enough, then you will probably feel like "new" shortly.

I unfortunately have osteoporosis from this, and I cannot tolerate the osteo drugs like fosamax, etc. I am building back up with supplements and continuing with an organic based diet and purified water,(which I had been doing for years, anyway).

Hope that helps.

I totally agree that its likely both of you have been detoxing and thus so very tired. Besides the dandelion root and possibly cleavers etc. etc. I highly recommend using olive leaf --either make a tea out of the leaves or buy a gluten free olive leaf extract capsules like from NOW. It helps immensely against aches and pains, esp. muscular ones, and fibromyalgia like symptoms--as well as viruses and bacteria and fungi (think candida girls!).

As far as the osteoporosis (which I also have) I now take E-zorb as my calcium source (available online only--this Chinese formula/invention after 20 years resarch is 90% absorbable--the only thing that works for me who used to peel my fingernails, falling out hair etc.) in addition to home made 24 hour yogurt (by then all the lactose has been fermented out). It is fantastic for the gut plus is still a very good source of more absorpable calcium. I periodically try going off the E-zorb but soon enough discover I need to get more again due to achey joints--my neck in particular--though its not as bad as it was now that I take the olive leaf regularly --though its obviously still needed.

Taking vitamin D is important too. I personally like cod liver oil, though I know not everyone can digest it...

Lynayah Enthusiast

Last year, I was diagnosed as having basically almost no vitamin D in my body. I cannot even begin to tell you the exhaustion I felt. I was also in pain, my joints were swelling, and I was so weak I could hardly carry a quarter pound wallet purse. It was horrible . . . and I never, ever, EVER would have guessed my problems were from a vitamin deficiency. I was always so careful to take care of myself.

I had been taking a high quality multi every day, as well as extra calcium, etc., but my body was not absorbing D.

I agree with the other wonderful posters here: As soon as you are able, you might want to consider having a GOOD GI or rheumatologist check your vitamin levels -- or whatever assistance you can get right now.

Be careful -- it is important not to self-diagnose yourself and equally important not to take mega-doses of D (or other vitamins) on your own. You need a qualified professional to guide you. D can be dangerous if not administered correctly, as warranted, in just the right amounts.

You're in my prayers.

Lyn

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. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748

    dnamutant
    Newest Member
    dnamutant
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.