Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Sleep Too Much Prior To Diagnosis Of Celiac
0

17 posts in this topic

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?

0

Share this post


Link to post
Share on other sites


Ads by Google:
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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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. :):)

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

:)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites
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...

0

Share this post


Link to post
Share on other sites
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

Try some Armour thyroid (or other T3 source if you are a veggie). It's done great things for me. Might not work for you. but it's at least worth a try. Levoxyl migh as well be a placebo to me. I need large amounts of T3.

I've been tired all week and found out that my protein powder has gluten in it. The replacement I ordered also has gluten, despite the "gluten free" label. I can't wait until I'm completely gluten free for several months to see how much energy I have.

I was tired to the point that it seriously effected my reaction times and made me a danger to myself when I'm on anything less than 15mg below the Armour dose that causes me occassional heart palps and a stimulant. It's hard when you're an adrenaline junkie that's too tired to get your fix. I used to do bicycle distance riding and let me tell you, it sucks when you space out on the motorcycle and end up asphalt surfing. The only good part is all the new gear I'm buying (Mmmmm, leather).

0

Share this post


Link to post
Share on other sites

I was sleeping about 16 hours a day just before and for a few months after being diagnosed, I was anemic. It wasn't until a full year after going gluten-free, that I didn't tire easily (i.e. I wouldn't wake up tired, but I could still tire if I walked around downtown shopping etc). It clears up and then you feel amazed at the amount of energy you have! I also used to get really lethargic and an almost doped up feeling after eating during those few months after diagnosis, thankfully that went way. It was like I had just eaten a huge Christmas dinner, every day for three four months! Awful, it seems like you will feel tired forever, which can be depressing but it goes away. Like others have said, once he heals, it won't sleep as much. Unless his fatigue is due to something else, but chances are it's from lack of vitamins and nutrients.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,091
    • Total Posts
      920,310
  • Topics

  • Posts

    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
    • I do not struggle with this and I was brought up the same way as you. I don't struggle because for many years off & on we didn't have a bathtub, only showers as well as this being therapy or medicinal for the skin - heck even for the muscles as I age. I figure I've earned my right to luxuriate or medicate with baths any time I've a mind to. My husband saw just how bad my dh got & NEVER begrudges me a nice long soak in the big soaking tub we now have.
    • Hi, No, I do not have celiac  disease. I have an ankylosing spondylitis which is an auto-immune disease provoking an inflammation of the joints. Under the advice and supervision of my doctor and the professor at the hospital I follow a gluten free & casein free diet, which is extremely successful in preventing inflammatory events. And I've been doing so, strictly, for more than 6 years. So I'm not Celiac, but I can tell you that I react strongly every time I take gluten even in small amounts. Even soya sauce, which according to this website has an almost zero dose of gluten, is a lot too much for me. Nevertheless I allow myself to eat food which has been processed in a factory which processes gluten. To conclude, I would say that when you are travelling, especially in a country where celiac disease is scarcely known, you should be twice as careful as when you're going out at home. In the end you can never guarantee that the cook has cleaned his pan after using soya sauce and so on... You can only bet
    • Along those lines, many Americans are now pursuing gluten-free eating. Gluten ... Diagnosis of celiac disease typically requires a history and physical ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,121
    • Most Online
      1,763

    Newest Member
    Sambud
    Joined