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I Tend To Need A Lot Of It


GEF

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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


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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


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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

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      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
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    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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