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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.

I Never Feel Rested
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49 posts in this topic

I am always exhausted. Always. I rarely feel "rested" - it doesn't matter if I get 3 hours of sleep or 13 hours, I feel exhausted.

I almost always want to sleep, and when I do get up I don't want to get up becuase I am so tired. Ofcourse, I do get up because I have to, but that only leads to the perpetual cycle of exhaustion. I feel like I am almost always running on empty.

Also, being that I have Hashimotos and also have ADD and other general anxiety tendencies, I have to "feel" like sleeping, in order to go to sleep (which is so not condusive to feeling well rested!) And, with my energy levels being virtually nil because I feel cruddy all of the time, if I get a burst of energy at 1am, I'll take it when I can get it (also, not condusive to feeling well rested.)

Sleeping isn't always my problem, sleeping well - is !

I know this only adds fuel to the fire.

Anyone relate?

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I can relate - somewhat.

For me, though, it seems to be sleeping too much and not feeling rested. I can sleep for 14 hours, drag myself out of bed and feel like I need to sleep for 14 more. Once I am up out of bed and moving, I can't sit down anywhere comfortable for more than a few minutes at a time, or I fall asleep. But when it comes time to actually go to bed, my mind doesn't want to shut down - and anxiety often kicks in. It's not a fun cycle. :(

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I so hear you ! If I could I would stay in bed for that long, but I can't :huh:

My mind has a hard time quieting down too, most of the time. I have sleeping meds, and I also used aromatherapy and relaxation music if I anticipate having too difficult of a time (and they do help some.)

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have you had a sleep study done? while they weren't sure about the results from mine, there was some indication of restless leg, and rls meds have helped *TREMENDOUSLY*. (not saying rls is your problem, but rather a sleep study may be able to help find issues with sleep quality that you can't find on your own.)

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I so hear you ! If I could I would stay in bed for that long, but I can't :huh:

My mind has a hard time quieting down too, most of the time. I have sleeping meds, and I also used aromatherapy and relaxation music if I anticipate having too difficult of a time (and they do help some.)

I only get to stay in bed that long on the weekends.......hubby gets up and doesn't bother to get me up. I don't know whether to thank him for it, or slug him when I do get up and he says "I thought you'd sleep all day!" :ph34r:

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I'd highly recommend a methylcobalamin (vitamin B12) supplement. Not only can it help greatly with energy and sleep patters, but also neurological functions, coordination, skin/hair/nail health, and much much more. I'd suggest at least 3mg per day, spread out. Magnesium can be very helpful in this area as well.

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I totally relate to this. I feel like a slug most of the time. It is hard to get the energy to do anything. It is so frustrating. I think I will try that vitamin b12 tip.

I find I wake up all night long. Never get any "deep" sleep. It is taking it's toll on me.

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Add me to the list of people who are always tired. I haven't slept through the night in over 10 years.

It sucks, and I sleep better than I used to, but I still can't sleep normally after 2.5 years gluten-free.

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Adrenal fatigue (or worse, adrenal exhaustion or Addison's disease) often is the culprit when somebody never has any energy at all. Longstanding celiac disease can cause adrenal fatigue.

For somebody who is taking thyroid medications, they often do not work until the adrenal glands are looked after.

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I did a sleep study last night, and failed it. :( She says I will be back in a few weeks to test a CPAP machine. I have been gluten free for 8 yrs, I take 3000mcg of B12, my magnesium level is fine, I have had my thyroid tested several times, and always comes back "within normal ranges"! I have sleep apnea, as do 2 of my sons! Ask your doctor about it. One of my sons has been on a CPAP machine and he feels so much better. His snoring has stopped, and believe me, he was as loud as a train...he has quit hitting his girlfriend while sleeping, and he has stopped falling asleep while driving :o, that symptom I didn't know about until after the fact, thankfully!!!

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Do you have dark circles under your eyes and are you sensitive to light by chance? I have severe Adrenal Exhaustion and I have been taking. Sounds like you've burned out your little adrenals.

Raw Adrenal Caps (I use Solaray) 2 every morning, noon and bedtime (LOVE these)

Magnesium Stearate (200 mg) 1 in morning, 1 at noon

1000 Vit C moning, noon and bedtime

It can take a year to heal mild, 2 for severe.

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I'd venture a guess you need a higher dose of thyroid hormones. I get this way too if my TSH gets too high (like over 2-ish).

Oh yeah, the sleep apnea thing. Forgot about that one. That's another one that'll make you drowsy during the day.

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I have not been on this website since 2005 when I first found out I had Celiac. I was searching today on sleep disorders trying to find out why I can sleep 8 hours or more, take thyroid medicine, eat a well balanced diet, exercise, and still be tired. I have such a hard time waking up. Almost like I go into a comma at night or something. My hands swell and I feel irritable and tired all day. If I push through I usally will "wake up" in the evening for a few hours. After reading these posts, it sounds like this may be a common problem between Celiacs. Does anyone know if there is a study going on about this? Any suggestions or ideas? I really need some help. I have 3 kids to raise and just don't have the strength to keep up.

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When was the last time you had your Thyroid levels checked?

I have severe Adrenal Exhaustion. That is very common among Celiacs.

Do you have dark circles under your eyes? Do you crave salt?

Read this I will tell you the supplements you need to take if you are interested.

But like Celiac Disease you won't get better overnight.

Be well!

http://www.mcvitamins.com/adrenal-exhaustion.htm

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sickchick,

I know you've suggested it before, but this is the first time I've checked out that link you posted. Don't know if I missed it before or what. I can check off 31 items on that list that apply to me. Think I better get it checked out.

Now a question.........would I just ask for a thyroid check? Or is there something more specific to ask for?

I just recently had thyroid levels checked, and my TSH came back at 2.238, which according to the range seems to be middle of the road. Are there other tests that should be done?

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WOW! You have Adrenal Exhaustion, Sweetie.

For that you need to find a good Raw Adrenal Complex (I take Solaray... love it)

You can get it @ Health food store

If you don't get Solaray make sure you pick one with RAW GLANDULAR in it

morning:

2 Adrenal Caps

1ooo mg Vitamin C

200 mg Magnesium Stearate

noon:

2 Adrenal Caps

1ooo mg Vitamin C

200 mg Magnesium Stearate

bedtime:

2 Adrenal Caps

1ooo mg Vitamin C

If you are suffering from hairloss, add 5000 mcg Biotin.

My ND was convinced I had Low Thyroid all my tests were TOTALLY NORMAL...

turns out I have Adrenal Exhaution AND Raynaud's! (cold all the time- fingers & toes turn white- circulatory)

Oh, btw, the Solaray caps have Siberian Ginseng (for energy) and Gotu Kola (memory enhancer)

I find these help cut through 'brain fog' :)

Plan on taking these for about 2 years!

Be well!

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Was there a particular test that your ND did, besides the blood test?

Or do you think I should just go get the Raw Adrenal Complex and start it?

I am cold all the time too, but can't say I remember ever seeing my fingers/toes go white.......

As for hair loss, I think I lose more than I should, but it doesn't come out in chunks - it just builds up in the shower drain and all over the bathroom counter/floor - and I have short hair, so I don't think I should see as much as I do!

Thanks!

(PS. Jess, sorry for the hijack!)

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No, no other tests it. Basically it's like you have damaged your Adrenal glands during times of repepetivive, severe stress and they are burned out. There are no tests or bloodwork necessary. Which is why there are lots of people with it who have no idea why they can barely function.

I need to make a correction to my post above, it's MAGNESIUM CITRATE (sorry it was the middle of the night when I was having a snack attack) B)

Yes start the supplement immediately!

I am happy for you!

OH~ Read up on Raynaud's and see if it's you.

http://www.mayoclinic.com/health/raynauds-...ECTION=symptoms

lovelove :)

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This is going to sound very cynical.........but if there are no tests for adrenal fatigue, how does one know for sure that's what it is? Or do ya just start the supplements and pray? I mean I know taking the supplements will not likely do any harm, but if that's it, will it take two years to feel results? That just seems like a long time to be hoping the supplements help when there may be something else going on.

I'm sorry, I know my post sounds terribly negative, and I really don't mean it to be.

I guess I'm torn between wanting something that might make me feel better and needing something concrete that says "THIS is what's wrong and THIS is how you fix it."

:(

Edited to add: I checked out the link about Raynaud's you posted, and even though I almost always have cold hands and feet, I've never noticed the color changes or felt the tingling feeling (not related to cold anyway).

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It is what you call 'sub-clinical' which means it is not readable on a test.

IT IS IMPARATIVE YOU STAY POSITIVE... I can't tell you what a difference it makes.

You are here to find answers, Sweetheart, and the universe is practically shoving them in your face (LOL) :lol:

It is YOUR TIME TO FEEL BETTER.

YOU DESERVE IT

:)

Go put in a funny happy movie, make some gluten free muffins and see the light at the end of the tunnel ;):P

Laughing is the best thing to make you not feel sick.

Also surround yourself with POSITIVE SUPPORTIVE PEOPLE

:)

OH! I was just reading my Celiac Disease book and I thnk you have Peripheral Neuopathy (Part of Celiac Disease) where you have numbness & tingling in your extremities... ( fingers & toes, lovelove)

:)

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I know, I know. :rolleyes: I'm hopeless, sometimes. ;)

I'm not back on the gluten-free diet yet; was waiting on more bloodwork results, but I'm TIRED of feeling crappy, so am just gonna do it. I'll hit the health food store too, and try these supplements too.

Now.....can you tell me where I might find positive support people? Can I purchase these locally? :P J/K

Everyone here is awesome, it's just sometimes I could use a real shoulder to cry on and a big hug, ya know?

Part of my problem today is that it's incredibly overcast - sunshine always helps cheer me up, even if it's 112 degrees outside. <_<

Thanks for your help and your pep talk, sickchick. :wub:

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Oh, Sweetheart I understand the crappy feeling during clouds & cold days. (Seattle, born & raised)

If it's at all possible, one thing you need to help heal is 30 minutes of sun every day.

You ALWAYS have me! I am as nutty as they get. B)

You are feeling off because of the Adrenal Exhaustion Sweetie and that makes you feel hopeless because they aren't producing the proper hormones that you need to function every day. Things seem dark and bleak. Not your fault!!! But you now have the tools

I promise you will feel better! Think of me as your personal cheerleader ;)

rah rah rah! :lol:

lovelove

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:D xxx
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sickchick,

How long were you taking the Adrenal caps before you noticed a difference,

and what did you notice improved first?

rumbles

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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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