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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Extremely Fatigued, No Energy, And Can't Sleep
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22 posts in this topic

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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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?

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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:

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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

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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.

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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.

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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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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! (:

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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...

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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.

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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.

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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

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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!

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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!

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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.

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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.

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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.

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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!

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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!!)

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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:

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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.

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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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    • does your diet have to be like a perfection?
      Yes.  You have to be 100% gluten abstinent when you have Celiac Disorder.  It gets easier to be gluten abstinent, not because you get used to it but because of the negative effects that ingesting gluten causes when you accidentally eat something with gluten.  Nothing tastes good enough to go through a glutening.  As your system heals it will become less tolerant of your occasional lapses into gluten consumption--accidental or otherwise. You have to take this seriously.  You get used to it and there are some wonderful gluten-free options out there.  But you can't go back to gluten and stay healthy.  It just doesn't work that way. Good luck.
    • does your diet have to be like a perfection?
      I  think you need to watch where you get your medical info!    Of course you can't introduce gluten back in. And  of course you have to be strictly gluten-free and not intentionally eat gluten.   "The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage your intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. It can take weeks for antibody levels (indicating intestinal damage) to normalize after a person with celiac disease has consumed gluten. Depending on a person’s age at diagnosis, some problems, such as delayed growth and tooth discoloration, may not improve. The gluten-free diet requires a completely new approach to eating. You have to be extremely careful about what you buy for lunch at school or work, eat at cocktail parties, or grab from the refrigerator for a midnight snack. Eating out and traveling can be challenging as you learn to scrutinize menus for foods with gluten, question the waiter or chef about possible hidden sources of gluten, and search for safe options at airports or on the road. However, with practice, identifying potential sources of gluten becomes second nature and you’ll learn to recognize which foods are safe and which are off limits." http://www.cureceliacdisease.org/living-with-celiac/guide/treatment    
    • does your diet have to be like a perfection?
      FlowerQueen is correct.  Once diagnosed with celiac disease, you should never consume gluten again without the risk of becoming very ill (osteoporosis, liver damage, lymphoma, etc.).   I think everyone has trouble in the beginning sticking to a gluten free diet.  That's because gluten is in so many processed foods.  It takes time to learn to read labels, make a safe kitchen, learn to eat out, get your family to support you.  I would advise reading out Newbie 101 section under "Coping" within this forum.  It contains valuable tips for becoming gluten free.  Also, check out the University of Chicago's celiac website to learn about celiac disease.  Knowledge is power!   Everyone has different degrees of damage, but I would say that learning the diet and healing can take months to a year or longer.  The good news is that this is an autoimmune disorder that is treatable -- avoid gluten at all costs!   Take care and welcome to the forum!   
    • does your diet have to be like a perfection?
      Not sure what you mean by perfecting your diet? Do you mean accidentally eating gluten?   As to re-introducing gluten again, if you have celiac disease, please DO NOT ever re-introduce gluten again. It's an auto-immune disease, not a food intolerance. It will damage your gut again if you do.  Hope this helps.
    • 3 months gluten-free still feeling cramps
      First of all, your doctor does not seem to be celiac savvy.  It is so easy for a GI doctor to miss patches of intestinal damage on an endoscopy because the small intestinal wall, if spread out is the size of a tennis court!   How many samples were taken and submitted to a pathologist?  A visual look from the GI often results in nothing!  For example, my endoscopy visual was recorded as normal.  But my biopsies revealed moderate to severe intestinal villi damage (Marsh Stage IIIB).  GI's are supposed to take four to six tissue samples.  I would suggest getting copies of all your lab/procedure reports.  Don't trust me.  Here's the research: http://gi.org/guideline/diagnosis-and-management-of-celiac-disease/ http://www.cureceliacdisease.org/living-with-celiac/guide/diagnosis Next, three months of eating gluten free is not very long.  The reality is that there is a steep learning curve to going gluten free.  You can get "glutened" by kissing someone who just consumed gluten.  You can get it from a shared toaster, coated frying pan, wooden spoon, etc.  Gluten can be hidden in prescription medications, etc.  Do you EVER eat out?   I can tell you that it took me a year to feel pretty good and another to feel really normal!  My learning curve was not so steep since my hubby had been gluten-free for 12 years prior to my diagnosis, so I knew the drill.   You could have something else besides celiac disease.  Like SIBO, Crohn's, etc.  You might consider going back to your GI for another celiac antibodies test to see if you are diet compliant  before looking into other illnesses.   You could have developed intolerances (lactose is a huge one).  These can be identified by keeping a food diary.  They develop because your gut has been damaged (or is continuing to be damaged by gluten).  You might consider digestive enzymes (use certified gluten-free ones) and stick to whole well-cooked foods (including fruit) for a month or so.  I can tell you that I could not eat eggs for years.  Now I eat them daily.  Same for hard-to-digest things like nuts and crunchy fresh veggies!   Check out our Newbie 101 section pinned under the "Coping" section of this forum.  Review it to be sure you really are gluten free.  Then give yourself some time to heal.   I hope you feel better soon! 
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