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Sleep Too Much Prior To Diagnosis Of Celiac


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16 replies to this topic

#1 ktneal

 
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Posted 23 March 2006 - 11:38 AM

My boyfriend has just been diagnosed with Celiac disease. Up until this point he sleeps up to 20 hours a day and just can't get up. Needless to say, this affects him tremendously with work etc. Did anyone have trouble with this prior to going gluten free and did it get better once gluten free? I see a lot of posts that fatigue is worse after going gluten free. Is it going to get worse for him? I theorize that maybe he is so tired because he has not been getting the proper nutrients because of the disease but maybe I am wrong?
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#2 nettiebeads

 
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Posted 23 March 2006 - 12:16 PM

My boyfriend has just been diagnosed with Celiac disease. Up until this point he sleeps up to 20 hours a day and just can't get up. Needless to say, this affects him tremendously with work etc. Did anyone have trouble with this prior to going gluten free and did it get better once gluten free? I see a lot of posts that fatigue is worse after going gluten free. Is it going to get worse for him? I theorize that maybe he is so tired because he has not been getting the proper nutrients because of the disease but maybe I am wrong?

Nope, you're right, the body isn't absorbing the nutrients needed and so he sleeps a lot. My fatigue and lethargy finally cleared up when I got rid of the last of the gluten in my diet. I had ignored the four letter word malt in my cereals and alcoholic drinks for years - I should have known better. Anyhow, celiac is an autoimmune disorder and progresses differently for everybody and everybody's healing occurs at different rates. But generally speaking - once ALL of the gluten is out of his diet, things should start improving. But many factors affect the healing rate - how long sick, how much damage, how well he is maintaining the gluten-free diet. Is he having other foods bother him? A lot of the time diary is hard to digest until the intestines have healed enough. Just focus on the gluten-free diet, and beware of cross contamination and hidden gluten sources in meds, toiletries and such. Good luck and keep us posted!
Annette
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gluten-free since Oct 1996

#3 jerseyangel

 
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Posted 23 March 2006 - 12:29 PM

He may notice that initally on the gluten-free diet, still wanting to sleep quite a bit. The first month or so, I felt like I couldn't get enough sleep. I believe it was my body in a healing mode. Everyone's stories of healing are different. I think that his sleep pattern will eventualy improve--it's hard to say how long that will take. As he begins to absorb his food and the vitamins and minerals he needs to begin the healing process, I'm sure that he will begin to feel more energetic as well.
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Patti


"Life is what happens while you're busy making other plans"

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#4 ktneal

 
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Posted 23 March 2006 - 01:00 PM

Thank you for your fast responses! You mention watching hidden gluten in products such as meds and toiletries. How do we go about finding these out? Is there someplace on the internet or elsewhere that will help figure this out or is it a one product at a time thing? Also, do you know if using certain external products can affect him, such as shampoo and lotions? Or is it just things ingested? He also has DH. Thanks!
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#5 mouse

 
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Posted 23 March 2006 - 03:17 PM

I was also sleeping about 20 or more hours a day. After I went gluten-free, it did not take that long for me to sleep relatively normal. I have been gluten-free for two years and I still have a problem with exhaustion. But, I am almost 64 and went undiagnosed for at least 30 years. I did not find this support group until last year. So, what I did in the beginning was use my wok almost daily. I cut up fresh meat and fresh veggies. I used only olive oil. I put this on plain rice. Then I went through my frig and pantry. I called every company in there to find out what was safe. It took me weeks, but I wanted to get better. I have found some of the better gluten-free foods from this forum. I order my bread from Kinnickinnick in Canada. Whole Foods, Henry's and some health food stores have many gluten-free items. My local grocery store sells my Tinkyada (sp) pasta. And all the previous stores sell it. Get a new toaster because of cross contamination. Get gluten-free shampoos because it can get in his mouth. Anything that gets in his mouth has to be gluten-free. If you have any doubt do not eat, until you call. Most manufactures have info on their websites and most will answer a email. I also lived on my computer in the beginning asking about gluten in their products. If they did not answer me, in the garbage it went. It used to be that you could not get a pharma (can't spell it) company to respond to an email about a generic drug. My expierence has now been that they answer within 24 hours. Good luck. Everyone here will have wonderful ideas to help you transgress this path. He will get better.
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#6 Lisa

 
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Posted 23 March 2006 - 03:58 PM

i used to sleep so much and felt very lazy before I was dx. My energy got better and a B-12 shot really helped me. It has taken me 6 months now to controll the D, and the energy has returned but I still have a long way to go. So patient, it will come. :) :)
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Lisa

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#7 DingoGirl

 
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Posted 23 March 2006 - 04:43 PM

Before my diagnosis, I was sleeping 12 - 14 hours and FORCING myself to get up...it was so awful. I went immediately gluten-free upon diagnosis, it was tedious at first trying to figure everything out.....but after just a few days on the diet, I felt MUCH better. Physically, I usually have much more energy now, and only sleep 8 hours usually, over two months gluten-free. Mentally, I'm on a bit of a roller coaster, but there is much in my life to keep me stirred up.

This forum saved my life....there is so much information here. Your first instinct will probably be to go to Whole Foods, but be warned, I had a breakdown the first time there, as many people do, I hear. It's overwhelming but it DOES get better. If you have a Trader Joe's anywhere nearby, that is fantastic. And, there are some great recipe threads on here to look into where wonderful people have taken the time to post great foods.

blessings -
Susan
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#8 ianm

 
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Posted 23 March 2006 - 05:04 PM

I used to have chronic fatigue and would be so tired it was a major effort to go from the bedroom to the bathroom. I almost lost my job during that time. After two years I have a lot of energy and only need 6-7 hours of sleep. It was a two year process to become fully healthy but it is so worth it. I have a new job that is extremely demanding but I have the health and energy to handle it.
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If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.
Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?
Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.
Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

#9 Ronnie

 
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Posted 10 April 2006 - 08:31 PM

wow things are making so much more sense. I would sleep for a good 12 hours and still get up exhausted.
I just got diagnosed with Celiac about a month or so ago. So i'm still working out all my symptoms.
I thought i was just lazy, but maybe my celiac had alot to do with it.
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#10 Guest_Babbia_*

 
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Posted 10 April 2006 - 08:48 PM

I would sleep 12-14 hours regularly prior to going gluten-free. Everyone in my life complained about my sleep habits, but little did any of us know!

:)
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#11 jaten

 
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Posted 11 April 2006 - 03:15 PM

I could easily sleep 12-14 hrs before diagnosis and gluten-free. The hours I was awake, I wasn't awake. Once I went gluten-free, my sleep habits and alertness improved pretty rapidly. I may have slept more for a few weeks, (someone said, "healing mode;" that was exactly what I felt like). I know that my digestive system is still healing; I'm still having some problems there, and facing additional intolerances. Fortunately, however, I'm awake.

Oh, and also significant, is that I sleep better. I use to wake up tired and did a lot of tossing and turning, and just yuck sleep. Now I sleep restfully and for far less time; I awake feeling refreshed.
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#12 Guest_BERNESES_*

 
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Posted 11 April 2006 - 03:44 PM

Before I went gluten free I was sleeping 12-14 hours a night plus a 3-4 hour nap during the day. I was really lucky that it was summer time and Ii wasn't in classes! I attributed it to depression and grief because my mom had just passed away. I'm sure those factored in. I actually went on Wellbutrin because I was so chronically exhausted.

When I finally went gluten-free about 6 months later, I was able to go off the wellbutrin within weeks. I still need more sleep than the average person (like 10 hours at night) but generally the only time I need to nap is when I'm glutened or it's just a good nap day.

You asked about finding the hidden gluten. Companies now clearly list wheat (major allergen) but you still have to look for rye, barley, oats, malt. There's a list of forbidden ingredients on this website that I printed out when I first went gluten-free and carried around with me. Also, there's a big 70 page list from the Delphi gluten free forum but it's about a year old now.

For shampoo, soaps, etc. 2 companies that will clearly list wheat are Dove and Neutrogena.

He will eventually need less sleep, but like everyone else said, we all heal at different rates so it might take awhile.
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#13 jerseyangel

 
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Posted 11 April 2006 - 04:01 PM

Before I was gluten-free, I did not sleep for more that 2-3 hours at a time all night long. I was always exhausted and sick. Right after I began the diet, I suddenly could sleep deeply all night--8-9 hours straight. I felt like I could not get enough sleep. That lasted for about 4 months.
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Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

#14 ebrbetty

 
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Posted 15 April 2006 - 04:56 AM

I can never get enough sleep, I'm always tired and on the days I'm home I take a nap every afternoon, if I don't I can't even cook dinner.
I was DX with FM/CFS 5 years ago and have hypothyroid..can't get my numbers down even with the synthroid
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~Betty

#15 Lillyth

 
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Posted 21 April 2006 - 06:37 PM

I thought i was just lazy, but maybe my celiac had alot to do with it.

OH MY GOD!!! That's just what I thought too! (If I had a dolar for every time I have said that....)

Thank god for the miracle of the internet & forums...
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