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

Extremely Fatigued, No Energy, And Can't Sleep

GF1830813

By GF1830813
in Related Issues & Disorders

Recommended Posts

GF1830813 Newbie
GF1830813
Posted

I have been gluten free for a little over 2 months and while being on the diet I have become very tired, no energy, and issues with sleeping. Has anyone else had this issue? Could there be another underlying issue? It doesn't matter how much or how little sleep I get I am always exhausted.

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

Celiac.com Sponsor (A8-M):


AmandaRae Newbie
AmandaRae
Posted

I have been gluten free for a little over 2 months and while being on the diet I have become very tired, no energy, and issues with sleeping. Has anyone else had this issue? Could there be another underlying issue? It doesn't matter how much or how little sleep I get I am always exhausted.

YES!!! I've only been gluten-free for 2 weeks and I'm absolutely exhausted. Fatigue was one of my chief complaints before my celiac disease diagnosis, but it has just gotten worse.

I really think it's because I'm not getting enough carbs in my diet. So I'm working on that! Plus, my Vitamin D level was extremely low. I'm now taking supplements. Have you had yours checked?

Lisa Mentor
Lisa
Posted

If you haven't already done this...I would recommend a full metabolic panel to check your mineral and vitamin levels. Often times, many can be deficient in B-12 and Folic Acid as well as other things due to lack of absorbing.

After my diagnosis, I had B-12 shots once a week for six weeks. My improvement was extraordinary.I could walk a straight line again and I could speak a whole sentence with success. :rolleyes:

DonnaJ Newbie
DonnaJ
Posted

I have been gluten free for a little over 2 months and while being on the diet I have become very tired, no energy, and issues with sleeping. Has anyone else had this issue? Could there be another underlying issue? It doesn't matter how much or how little sleep I get I am always exhausted.

I was just recently diagnosed with celiac disease .. It all came about because I was tired all the time and would fall asleep at my desk. I was found to be anemic and had an iron deficiency. I take an iron supplement and seem to be feeling a little better.

So you might want to have that checked as well.

Donna

Dugudugu Rookie
Dugudugu
Posted

This is an interesting question, because I am in the exact same situation. I am also 2 months gluten free, and went to my gp two days ago and requested bloodwork. Only thing he wrote down was bloodwork on b12 levels. He thought that the vitamins and minerals was not much of usage. He still thinks I am having a chronics disease that make me tired, so his arrows are more pointing towards that direction than the whole gluten issue (I went gluten free after low b12 and low IgA levels, celiac bloodwork was negative and incomplete requsted. I had b12 shots in the past, they did nothing to me).

I am more tired than ever, and on the extreme tired days I am taking a sleeping pill, otherwise I am too tired too sleep. Actually very weid.

RiceGuy Collaborator
RiceGuy
Posted

I always had trouble sleeping before going gluten-free. And even afterward, there wasn't much improvement until I began some supplements. Vitamin B12 (the methylcobalamin type), co-enzyme B-complex, and magnesium are the ones which helped me the most with sleep, from what I can tell.

GF1830813 Newbie
GF1830813
Posted
  • Author

Thank you for all the feedback on things to try. I am definitely going to get my vitamin levels checked. The only vitamin level I had checked was calcium, so I will make an appointment and see if I can get tested for everything else.

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

Celiac.com Sponsor (A8-M):


  • 4 weeks later...
hottati Newbie
hottati
Posted

Hi, my name is Tatiana and I have been gluten free for over a year now but when I was first diagnosed I was also really exhausted all the time. However, as time has gone on I lost the tired and groggy feeling. One thing that I didn't lose was the fact that I don't sleep much. I usually only average about 5 hours a night at the most (I don't know whether this is from Celiac or the fact that I am a college student). You can try to do the whole B12 thing but if that doesn't work just give it time it could just be your body adjusting to the new diet. Good luck with everything! (:

  • 3 weeks later...
luvrdeo Apprentice
luvrdeo
Posted

So this is normal for a bunch of us? Because I'm ready to lose my mind I've been so tired - to the point that some days, the couch is where I stay...all day. My B12 and folic acid tests came back normal, and I've been taking a B12 supplement...but nothing gives. I go back to the doctor Wednesday, and am not sure what to even do! So frustrating. I feel like I'm far to young to want to sleep my days away...

RiceGuy Collaborator
RiceGuy
Posted

So this is normal for a bunch of us? Because I'm ready to lose my mind I've been so tired - to the point that some days, the couch is where I stay...all day. My B12 and folic acid tests came back normal, and I've been taking a B12 supplement...but nothing gives. I go back to the doctor Wednesday, and am not sure what to even do! So frustrating. I feel like I'm far to young to want to sleep my days away...

You're likely still healing, so give it time. Although it cannot hurt to take some key supplements, such as a co-enzyme B-complex, magnesium, zinc, vitamin D3, and probably a few others I'm not thinking of at the moment.

Of course, getting optimal nutrition is very important too, so eating well can make a big difference.

It may also be a good idea for you to have your thyroid checked. See www.stopthethyroidmadness.com for how to really interpret the test results, and what to do about it.

luvrdeo Apprentice
luvrdeo
Posted

You're likely still healing, so give it time. Although it cannot hurt to take some key supplements, such as a co-enzyme B-complex, magnesium, zinc, vitamin D3, and probably a few others I'm not thinking of at the moment.

Of course, getting optimal nutrition is very important too, so eating well can make a big difference.

It may also be a good idea for you to have your thyroid checked. See www.stopthethyroidmadness.com for how to really interpret the test results, and what to do about it.

I wish my eating was the answer...I eat healthier than anyone I know! It's scary how good I eat actually.

My doctor ran my TSH levels...apparently they were below normal. No idea what that means. That's the only test they did though. Maybe I can get more out of them tomorrow.

PrettyCeliac Newbie
PrettyCeliac
Posted

Have you had an extensive mark up of your blood? I was extremely low in magnesium, Vitamin B, testosterone and D - which once I started taking supplements, after about 2 weeks I started feeling more energetic.

I also struggle with insomnia and sleeping so I ended up getting a very low dose of Ambien to help me fall asleep. It's 5mg or so but just helps take the stress off of trying to fall asleep. I feel like a new person.

Rebecca

Pretty Little Celiac

CeliacShack Rookie
CeliacShack
Posted

So this is normal for a bunch of us? Because I'm ready to lose my mind I've been so tired - to the point that some days, the couch is where I stay...all day. My B12 and folic acid tests came back normal, and I've been taking a B12 supplement...but nothing gives. I go back to the doctor Wednesday, and am not sure what to even do! So frustrating. I feel like I'm far to young to want to sleep my days away...

I feel the same way. I went to my PCP yesterday to talk about getting my levels checked, just need to call my insurance to make sure they'll actually pay for them. I'm so tired of being tired!

luvrdeo Apprentice
luvrdeo
Posted

I feel the same way. I went to my PCP yesterday to talk about getting my levels checked, just need to call my insurance to make sure they'll actually pay for them. I'm so tired of being tired!

My doctor ordered all kinds of tests today for the fatigue - he said its a tough one to figure out because it can be caused by SO many things in our bodies - but to not give up, that we'd find an answer. It's nice to know I'm not alone...and not totally losing my mind on this deal!

  • 1 month later...
M-Rods Newbie
M-Rods
Posted

I'm only just starting week 4 of being gluten free, but have had fatigue issues for over 2 years since my back injury, I can sleep an entire day away, if I didn't have to be at work I would be sleeping. I'm ramping up the vitamins now and hoping for some positive changes soon.

Songbird34 Newbie
Songbird34
Posted

I have been gluten free for a little over 2 months and while being on the diet I have become very tired, no energy, and issues with sleeping. Has anyone else had this issue? Could there be another underlying issue? It doesn't matter how much or how little sleep I get I am always exhausted.

That is interesting. I have found quite the opposite. Before going on a gluten-free diet I experience extreme fatigue sometime so bad that I couldn't force myself to get off the couch are out bad for hours in the morning. Then it would get worse as the day progressed. I've been gluten-free for about three months now. And all of the symptoms are gone. In fact, I am now running every day. This is something I have never done in my entire life.

  • 2 weeks later...
floral Newbie
floral
Posted

I had sleep issues in the beginning of my diagnosis...also, terrible jaw pain and neck ache at the end of a long day. I recently got glutened over the Thanksgiving holiday so I'm back to not sleeping, my jaw is killing me and my neck hurts. The only difference is that I know what it's from and do have tramadol for pain and something to make me sleep thanx to my neuro. Not big on pill taking but decided that falling asleep when the sun comes up doesn't lead to productive days. Let's pray this doesn't last long.

Kathy59 Rookie
Kathy59
Posted

Hang in there! In the beginning I went from not being able to stay awake to insomnia at night! Remember, we are all different and are bodies are at different stages of the disease! Highly recommend B12 sublinguial (dissolve under the toungue) Vit D3 (most people are lackin Vit D) B Complex...I take others, fish oil, Vit E. I also ate straight fresh fruit/veg and meat for months....lived in an area where gluten-free foods not available....finally ordered pasta and breads from Amazon.....soups too! I think it was good for me though to somewhat detox my system from all processed foods! Discovered how good real food is and still do not eat out much or processed foods...it does get better! Stay off the gluten...once you get past this...if you find yourself falling asleep it may be from ingesting gluten...if the gut pain doesn't get you first!

  • 3 weeks later...
Eva Bee Newbie
Eva Bee
Posted

So this is normal for a bunch of us? Because I'm ready to lose my mind I've been so tired - to the point that some days, the couch is where I stay...all day. My B12 and folic acid tests came back normal, and I've been taking a B12 supplement...but nothing gives. I go back to the doctor Wednesday, and am not sure what to even do! So frustrating. I feel like I'm far to young to want to sleep my days away...

I went to an allergy therapy clinic and they explained to me that conventional testing has their acceptable mineral / vitamine levels that are only "ok if you're barely active". They suggested to visit a naturopath and their levels are much higher - if that makes sense. I was convinced I was anemic and my doctor said that my levels were a little low but nothing serious but to try suppliments.. I did and I'm much better (even better now that I'm off gluten!!)

mushroom Proficient
mushroom
Posted

You will always find it recommended on here (or at least it should be) that you aim for the middle of the normal range. If you are at the bottom, you are just about to fall off the end :unsure:

  • 4 months later...
Brandiwine Contributor
Brandiwine
Posted

So this is normal for a bunch of us? Because I'm ready to lose my mind I've been so tired - to the point that some days, the couch is where I stay...all day. My B12 and folic acid tests came back normal, and I've been taking a B12 supplement...but nothing gives. I go back to the doctor Wednesday, and am not sure what to even do! So frustrating. I feel like I'm far to young to want to sleep my days away...

How long have you been gluten-free? I felt this way through withdrawal and detox the first few weeks.

LouiseP Newbie
LouiseP
Posted

I was suffering from chronic fatigue prior to my diagnosis in December last year.  After I started a gluten free diet it took about 6 weeks for me to detox and whilst I felt like I wasn't 100% I was doing much better.  I recently stopped taking the diflucan that my doctor had prescribed and added anti-fungals to my current regime of vitamins, digestive enzymes and probiotics.  Today I feel wiped out again and a little frustrated.  I've been struggling with allergies as well so I'm not sure if it is the allergies or the change to regime.  Has anyone else experienced this?  Do I need to check back in with my doctor?

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,559
    • Most Online (within 30 mins)
      7,748
    Valerie Ensor
    Newest Member
    Valerie Ensor
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      gluten-free Oatmeal

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Well said, @Mari!
    • knitty kitty
      Shingles - Could It Be Related to Gluten/ Celiac

      By knitty kitty · Posted

      Hi, @Ginger38, I've had shingles in the past.  I understand how miserable you're feeling.   Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten.  The virus lives dormant in the nerves on the left side of my face.  It causes Bell's Palsy (resulting in drooling).  The cold sore virus is also in my eye.  My eye swells up and my vision is diminished permanently whenever I have a flare, so it's of the utmost importance to keep flares away and treat them immediately if they do happen so I don't lose any more vision.   I take the amino acid supplement L-Lysine.  Lysine messes with the replication of viruses, which helps the body fight them off.   I haven't had an outbreak for several years until this year when exceptionally stressed and contaminated, it flared up again. Lysine has been shown to be beneficial in suppression of viruses like the cold sore virus (a herpetic virus), the chickenpox virus (also a herpetic virus), as well as the HIV virus, and even the Covid virus.   I also take additional Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) because Thiamine has antiviral properties as well.   For pain, a combination of Thiamine (like TTFD or Benfotiamine or Thiamine Hydrochloride), with B12 Cobalamine, and Pyridoxine B6 have been shown to have analgesic properties which relieve pain and neuropathy.    The combination of Thiamine B1, Pyridoxine B6 and Cobalamine B12 really does work to relieve pain.  I take it for back pain from crushed vertebrae in my back.  This combination also works on other pain and neuropathy.   I usually buy a supplement that combines all three and also Riboflavin B2 called EXPLUS online.  However, it's made in Japan and the price with the tariffs added makes it really expensive now.  But the combination of Thiamine B1, Pyridoxine B6 and B12 Cobalamine (and Riboflavin B2) still work even if taken separately.   I can't take Tylenol or ibuprofen because of stomach upsets.  But I can take the vitamin combination without side effects.  However, you can take the three vitamins at the same time as other pain relievers for added benefit.  The vitamins help other pain relievers work better. I hope you will try it.  Hopeful you'll feel better quickly. Interesting Reading: Thiamine, cobalamin, locally injected alone or combination for herpetic itching: a single-center randomized controlled trial https://pubmed.ncbi.nlm.nih.gov/23887347/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Analgesic and analgesia-potentiating action of B vitamins https://pubmed.ncbi.nlm.nih.gov/12799982/ A Narrative Review of Alternative Symptomatic Treatments for Herpes Simplex Virus https://pmc.ncbi.nlm.nih.gov/articles/PMC10301284/
    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
×
×
  • 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.