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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.

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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.

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  • 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?

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      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
    • Theresa2407
      Doctors and Celiac.com

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