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

Why Am I So Unbelievably Tired?


Nan2N

Recommended Posts

Nan2N Explorer

I don't know why, but I keep getting more tired all the time. It's been a month gluten free and I'm pretty sure I'm not getting any cc, but I seem to be getting weaker. Some days it's hard to get out of bed at all. Anybody else get this way? I need to eat more but find I'm too tired to even think about it especially since it's so restrictive. The last thing I want to do is cook. My B12 is around 642 so I don't know if I should supplement with any more. Can having too much cause other problems? I need some energy. Feel like I'm wasting away trying to get well.


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



Celiac.com Sponsor (A8-M):



Crimson Rookie

I think that is normal. I was like that too. Find a good liquid vitamin and let your body get the rest it needs.

Do what you can and take a break. I got through my spring cleaning in one hour intervals. I was taking what ever

time I needed in between. It took me a bit longer than last year....but I got it done! You'll gradually start feeling better.

Rozzy Newbie

I'm was actually JUST diagnosed with gluten intolerance, and i'm 3 days into the diet... and i feel SO burnt out...

Maybe the body has to readjust itself?

I'm too new to all of this so i have absolutely no idea... but i'll just continue trying to take it easy.. eat the right foods, take my multi-vitamins.... exercise etc..

Hopefully it passes though... it's a little disheartening when you feel worse than you did before the diet haha..

Makes you want to go back to your old ways! :)

S-J-L Apprentice

Ive only just been diagnosed and i feel the same way. I have less energy, more hunger and cant be bothered with preparing all my food!

It will pass im sure. Im scared about the wasting away too. Im only 103pounds, 5'8

Aleshia Contributor

Open Original Shared Link

this site is interesting... talks about overdoses of vitamins... I didn't see anything on there about B12 causing fatigue but it does say high levels of B15 does... anyway maybe you should take a look at it

Aleshia Contributor

sorry posted twice... :)

ravenwoodglass Mentor

Despite the fact that you blood test levels are showing fine your body may still not be able to utilize it. It can take a long time for the numbers in your blood to reflect this. Do not hesitate to get the sublingual B12, you do most likely need it and it will help with the fatigue. B12 is not a vitamin you can OD on, it is not toxic and also if you were taking any supplements with folic acid this will skew the numbers on the blood test also and give you a false high reading for the B12.


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



Celiac.com Sponsor (A8-M):



feelingbetter Rookie

I can relate to the fatigue. I am 2 months gluten free and 1 month dairy free. I sleep 10 hours at night and 2 hrs every afternoon. I was never one to nap but I sure am now. I keep thinking that the body is cleansing. My diet is pretty darn healthy as I basically eat meat, vegs, fruit, eggs, brown rice and a few nuts.

I became very fatigued when I gave up dairy.

Anyway I have made getting well my full time job.

Joni63 Collaborator
I don't know why, but I keep getting more tired all the time. It's been a month gluten free and I'm pretty sure I'm not getting any cc, but I seem to be getting weaker. Some days it's hard to get out of bed at all. Anybody else get this way? I need to eat more but find I'm too tired to even think about it especially since it's so restrictive. The last thing I want to do is cook. My B12 is around 642 so I don't know if I should supplement with any more. Can having too much cause other problems? I need some energy. Feel like I'm wasting away trying to get well.

Hi Nan2N,

I had similar symptoms and recently got my vitamin levels checked. Both my Serum Ferritin and my Vitamin D were extremely low. From what others say, that could cause severe fatigue.

Celiacs usually have not absorbed vitamins properly for quite some time before diagnosis. Can you ask your doctor to check your A, D, E, K, all B's, and full iron panel (possibly magnesium too)? It's quite possible your lacking something and it's causing the fatigue. If so, it's best to figure out what it is and treat the deficiency with high doses of supplements.

I'm beginning to think it should be standard procedure for a newly dx'd Celiac to get their vitamin levels checked and a bone scan to check for calcium/magnesium deficiences. The quicker these things are resolved the better we will feel.

Good luck to you, I know how lousy it feels to be fatigued all the time! :)

Nan2N Explorer

Thanks everyone! I just got some test results back. I thought they were checking for vitamins but all I see is ferritin,folate and iron. My ferritin is low normal. I'd like to get it up but what should you do for that? I know taking too much iron can be bad for you and my iron is okay but lower end. I feel like I'm constantly running to the doctors for tests. Guess I'll need to get some more blood drawn! Although now I've been on vitamins for awhile and that may change the results. This is all such a pain!

Joni63 Collaborator
Thanks everyone! I just got some test results back. I thought they were checking for vitamins but all I see is ferritin,folate and iron. My ferritin is low normal. I'd like to get it up but what should you do for that? I know taking too much iron can be bad for you and my iron is okay but lower end. I feel like I'm constantly running to the doctors for tests. Guess I'll need to get some more blood drawn! Although now I've been on vitamins for awhile and that may change the results. This is all such a pain!

My ferriton was only 7, the lowest range on the chart was 12. My doctor told me to take a large amount of iron every day.

Didn't your doctor tell you what you should do about it? I would think if it's in the low/normal range they could give you some type of iron supplements for it, but I have no idea what amount. I would think that's something you shouldn't try to figure out on your own, since too much iron in your blood is a serious problem. You might want to call back the doctor and see what they suggest.

I know how you feel about running around for tests. I'm doing that right now - a lot. The good part about it is that you will start to get answers and be able to address any deficiencies or problems that might be creeping up.

Have you had a full thyroid panel done? That might be another test you could suggest.

Archived

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

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

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • 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.