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

I Tend To Need A Lot Of It


GEF

Recommended Posts

GEF Explorer

I've never had much in terms of sleep problems.. I barely remember dreams, etc... but, I do have one problem.. I can never get enough sleep! At least 9 hours is what I need. It really is ridiculous at times as I feel I need naps during the day and I can literally have an emotional breakdown if I'm lacking on the rest.

Gretchen


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

I had that problem too. Part of it was helped by going gluten-free. Part of it was helped by having my testosterone levels tested and finding out I was low and supplementing that. And part of it is helped by getting regular exercise. (I know it's hard to do that when you're tired, but it really does help after a few days.)

flagbabyds Collaborator

YOu might want to get tested for sleep apnea because I needed 10 hours in bed to be able to concentrate in school, because realy I was only getting like 6 hours of sleep of the 10 hrs. I was in bed. Also I never remembered my dreams. Yes exercise helps a whole lot, it really wakes you up and it is much better than a nap.

traci Apprentice

Wow I am exhausted lately. I am not sure why, is this normal. I am rested when I wake up. I could be just running around too much but I fall asleep every night lately at about 6. :huh: Only been gluten-free for 10 days or so... will this get better?

LeeV Apprentice

My daughter was always sleepy before she was diagnosed and I found it strange because she never napped before. She's been gluten-free now two months and is napping only occasionally. Good luck.

Lee

  • 1 month later...
Guest momof3

I am sleepy most of the time. Even with a good nights sleep. I have been off work since 3-2004. I would like to return to work, but the fatuige takes over. I am taking iv iron therapy, but I feel its not doing the job. Blood work will be ran again today to see whats going on. I become so tired doing every day chorses. After I vaccum the house, I have to lye down. Last week I tried grocery shopping. I felt for the most part pretty good. Half way through the store I had to sit on the floor and call my sister come and pick my mom and myself up. I wont go any where by myself. I work with special ed students. I thought I was strong enough to return to work. About the 3rd day, I sat down because I had this weird feeling come over me. My co-workers got scared because I could not communicate,walk, or

open my eyes very well. They called 911, and I went to the ER. I have been in the hospital twice do to simular spells. I am so tired of being tired.

momof3

  • 4 months later...
ianm Apprentice

It took about two months for me to lose the fatigue after going gluten-free. I found that once the gluten was out of my body I was able to start exercising. If I don't do a least some exercise everyday I don't have as much energy the next day. It takes some time but it does get better.

Ian


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



Celiac.com Sponsor (A8-M):



cdford Contributor

I have gotten that whacky feeling where you can't communicate and are out of it. I spent many a day in the ER before being diagnosed with celiac. The neurologist says it is a problem with that system as a result of the malabsorption from the celiac disease. If I get glutened, it comes back.

The fatigue is awful. It is impossible to explain to someone how just getting from the bed to the bathroom or trying to put on your clothes can take the starch out of you. Many a time I have awakened feeling as though I could accomplish something...then by the time I got dressed I was so exhausted that it was no longer possible. My poor kids get so frustrated sometimes. They think we might get to go somewhere then I just can't.

Ruth UK Newbie

Hi,

I'm experiencing EXTREME fatigue at the moment (just recently been dx'd with celiac disease following blood tests and awaiting biopsy, so can't go gluten-free yet). My kids get really fed up with getting home from school to find me sleeping on the sofa!

I'm a fulltime mature student but when I don't have to go to Uni for lectures I find it so difficult not to sleep during the day - consequently I'm falling so far behind with my coursework etc! I am being granted 'concessions' but I still have to get the work done eventually - and at the moment trying to write reports is beyond me.

Really need my biopsy quick, and hope I 'repair' quickly after going gluten-free - it's my final year come September and I really need to get a good degree. Can't really afford to retake a year at my age.

Carriefaith Enthusiast
At least 9 hours is what I need.

I also need about that much sleep. I am almost always tired.

cdford Contributor

Hopefully they will get your biopsy done quickly so you can go gluten-free and get rid of this fatigue. It may take a while, but you should see some significant relief. In the meantime, consider asking your doctor if a drug called Provigil might help. I still have to use it if I am going to be out somewhere and am required to stay awake. Just be careful and start out slowly with it if they prescribe it. I have to take about a fourth of the usual dose or I am up for 24 hours or so. It might get you through the rest of this term and at least you could get that behind you.

Maggie1956 Rookie
I have gotten that whacky feeling where you can't communicate and are out of it.

The neurologist says it is a problem with that system as a result of the malabsorption from the celiac disease. If I get glutened, it comes back.

The fatigue is awful. It is impossible to explain to someone how just getting from the bed to the bathroom or trying to put on your clothes can take the starch out of you. Many a time I have awakened feeling as though I could accomplish something...then by the time I got dressed I was so exhausted that it was no longer possible. My poor kids get so frustrated sometimes. They think we might get to go somewhere then I just can't.

That sure sounds like me, cdford. :( Quite often when I try to have a conversation with someone, I just can't get the words out that are in my head. It' all gets confused and I just end up either stumbling, stuttering (which I only do if I'm REALLY tired) or appear as if I'm stupid or something.

It is really embarrassing. :wacko:

I'm always tired. It doesn't seem to matter what I do. I can have a full day out of the house, grocery shopping, doing any amount of housework, or sitting on my butt doing nothing, and I feel just as exhausted anyway. :angry: Not to mention the dizziness and muscle/bone pains.

<_<

Sometimes it makes me mad to not be able to do the things that I took for granted years ago. I can't concentrate enough to help my hubby do any chores. I feel a bit guilty at times, when I see him doing things I should do, but don't have the energy or I've forgotten to do it altogether. :ph34r:

Frustrating hey!?

KaitiUSA Enthusiast

I need alot of sleep too. I like to get about 9 or 10 when I can. I get tired pretty easily but it's been so much better since going gluten-free. I can actually do normal things again

kvogt Rookie

Soy can make me dumb as a brick - unable to participate in discussion, trouble forming complete sentences, etc. Dairy (I think) has caused me to be unable to follow conversation. I found myself repeating the words in my mind instead of underanding the meaning of the message. I think the nervous system effects of these food intolerances is worse than the gut problems!

cdford Contributor

The longer I am gluten-free, the better it seems to be. Someone mentioned soy as a problem. My endocrinologist says that some of the recent research is pointing to the soy as a contributor to the neurological problems in celiac. I have to stay away from it for that reason. Just let me get tired (and we all know how often that is...) or get into some gluten or soy and the neurological problems abound.

I hate that feeling of having a word in my head that won't come out my mouth or my brain telling my hand to write and it won't cooperate. That happened at a mortgage closing recently and made a frustratingly long process almost impossibly long.

  • 1 month later...
Generic Apprentice
I'm always tired. It doesn't seem to matter what I do. I can have a full day out of the house, grocery shopping, doing any amount of housework, or sitting on my butt doing nothing, and I feel just as exhausted anyway. :angry: Not to mention the dizziness and muscle/bone pains.

<_<

I have the same symptoms, I was finally diagnosed with fibromyalgia on Monday. I have been gluten free for 17 years (accept when I would have an accidental glutening). Maybe you should check into that?

Guest ajlauer

Wow. Somehow, I've missed this topic until now. I picture us all getting together... we try to chat, but nobody can form a complete sentence. Then we all fall asleep. *giggle*

I find myself telling people (quite often), "I know you just spoke english... but I have no idea what you said." Nice to know I'm not alone!

  • 4 weeks later...
julie5914 Contributor

Yeah, I need at least 9, sometimes 10, and if I lie down at any point, I WILL fall asleep, no matter how exciting whatever it is that I am watching on TV, especially after gluten. I have had positive bloodwork but am not gluten-free yet - waiting for an appt. with a specialist.

  • 3 weeks later...
Guest Doct.Giggles

I am mostly always tired and need a nap. There are some days when you have to pry me out of bed in the morning. I have been gluten-free for 3 yrs. and I still have sleep problems. I am trying to get this checked out because my parents think that I have another problem. One night I went to bed at 8 and I did not wake up untill 9. I just got really tired. Anyway, don't know if that helped or not, sorry :unsure:

-Tiffany

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,130
    • Most Online (within 30 mins)
      7,748

    Tony White
    Newest Member
    Tony White
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.