• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

I Tend To Need A Lot Of It
0

Rate this topic

19 posts in this topic

Recommended Posts

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

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.)

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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?

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites
Ads by Google:


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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites


Ads by Google:


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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites


Ads by Google:


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.

Share this post


Link to post
Share on other sites
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!?

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites


Ads by Google:


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?

Share this post


Link to post
Share on other sites
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!

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites
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

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
      108,114
    • Total Posts
      939,746
  • Member Statistics

    • Total Members
      66,100
    • Most Online
      3,093

    Newest Member
    Hebasamir
    Joined
  • Popular Now

  • Topics

  • Posts

    • IT could be many things, I find I have a gastric dumping issue with some meals, I know some food intolerance I have will trigger it. I know If I do not start my day with a big glass of hot liquid and magnesium and have it before a meal, that meal will sit it my stomach till it makes me sick and vomit it up 4-6 hours later. I know for me meats do not digest. they just sit in my stomach til I vomit them back up. Animal fats and certain oils do not digest same thing. just float in my stomach til I puke them up when they start going rancid in my stomach 4-6 hours later. I find digestive enzymes are a MUST. I take 2-4 times the suggested dosing, and even extra bromine with heavy protein meals.

      There is another issue where some people have weak stomach acid there for the stomach does not digest food nor dump it. If you have this issue then betaine hcl will help this. For me it was not my acid but a enzyme issue.
    • I am sorry that your daughter (and you) are experiencing this.  After diagnosis, celiacs need adequate follow-up care.  When was the last time her antibodies were checked?  Have they come down?  Are they still very elevated?  This link verifies what I said: http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/ By testing you can help rule out active celiac disease.  It can take most celiacs a year or years to recover from celiac disease and all the collateral damage that can come with it.   Then you might consider a dietician who is knowledgeable about celiac disease.  Often going gluten free is not enough.  People tend to just find substitutes for their already unhealthy food choices.  She should focus on fresh fruits, veggies, meat, nuts, dairy, legumes, rice, etc.  and avoid processed foods until she has really mastered the diet.  The learning curve is so steep!  Read our Newbie 101 thread found at the top of our Coping section.  It contains helpful tips.   Autoimmune thyroid is very common with celiac disease.  Be sure to have her thyroid checked and antibodies tested for the thyroid as well even if other thyroid lab markers are okay.   Besides the lack of periods, have her other symptoms improved?   I wish you both well!  As a Mom myself, I get the worry!  We want our kids to be safe and healthy!    I am glad you are championing her health!   Oh, did the rest of the family get tested even if symptom free?        
    • This might seem daunting but you will heal, you will be able to eat some foods again soon, but first you have to let go of some extras to speed up healing or your going to develop a few more issues your going to regret. Drop the processed crap, take your time cook whole foods from scratch. No sauces condiments, etc. Drop oats, do not deny it you know you feel edgy when you eat them, While your at it drop all grains, sugars, and carbs. Look up paleo diet, for now you can enjoy meat but if you keep on eating carbs you will loose the ability to eat meat period. You will also develop a corn allergy if your not careful, either the gluten CC or other complications best to limit corn intake and start working on removing it from your diet. Enjoy your grandmothers tamales once a month, learn to make them from her. You have or will develop something called ulcerative colitis, perhaps the paleo diet will prevent this or if you already have it it will save it from getting as bad as I know it did. PS Nunataurals pure powdered stevia, and eyrithrol will be your best friends but got easy on them too much will lead to gastric distress early on. And if you crave deserts like I know you will use nutvia coconut flour mixed with eggs for a base, use ground flax, and chia for thickening also. a little goes a long way and you have to let it set up a bit this will become a base for a lot of your food. Look at investing in a stone mill nut butter grinder, almond butter will be your best friend. To offset cost and make a road map out of life, develop grain free baked good and sugar free options. Artisan Almond Butters, etc. and sell them at farmers markets. You are meant to be a guiding light and to help others with this disease. Do your research look up Celiac.com, Get your own cook area, set up a small dedicated table with dedicated cookware else where, either your room or the bathroom. Let your mother have her kitchen and make your own this will ease family tensions. Invite her to learn how to cook in your area and stay safe. Practice with her and perfect your gluten free dishes early on for a successful chef job later on. You will need a small tabletop convection oven, rice cooker/crockpot/pressure cooker, microwave, nordicware cook ware, mixing bowels, spatula, freezer paper for work surfaces, etc. ALL NEW, DO NOT try to clean you old stuff IT WILL NOT WORK (trust me I tried it) Get a new blender and hand blender also took weeks to figure that one out.

      Supplement wise go look up lucky vitamin.com will save you tons of money. your probably feeling constipated still right? Get Natural Vitality Magnesium Calm and ease in to the dosing at 1/4tsp and ramp it up over the next few weeks, do not be discouraged if it gets really bad at first. Also look up Liquid Health, Stress & Energy and Neurological support they will be your life savers. Give up smoking now look up CBD oil, you will find it works much better for stress and anxiety attacks.

      If you have digestion issues look up enzymes from Jarrow, do not fear take 2-3times the does if you need them.
    • His diabetes educator is not an expert in celiac. IMHO the lets wait 3 months is cruel and unneeded.  Ask his GP if he will give the 'formal' diagnosis if you put him on the diet and those numbers go down with retesting in a few months.  Or ask for an immediate referral to a GI doctor knowledgeable in celiac. With numbers like that there really is no doubt about his need for the diet.
    • You finally know what has been slowly and painfully killing you. Recovery will not be quick but it will come. You will find yourself running up the stairs in 6 months and will sit sobbing at the top for half an hour. It will be about 5 years and lots of PT before you will walk normally again but not long ago you remodeled the bathroom because you were told you would be in a wheelchair soon. The nightly agonizing hours in the bathroom will be replaced with a solid eight hours sleep now except when you accidentally get glutened. Those glutening will come farther and farther apart though as you get better at the lifestyle.  It seems like there is nothing you can eat right now but that will change as more folks are diagnosed and more foods become better labeled.  Your skin will heal and your hair will grow back. That early gray isn't going away but eventually you will prefer it to having to dye it every three weeks or so because it now grows faster than it has at any time in your life. You will have lots of times that you feel sorry for yourself but a quick trip to look at that tackle box full of meds you no longer need will be a comfort. You will have some residual damage even years later but nothing you can't handle. You will be able to work again and to go back and finish those degrees but you will go back to school too soon. Don't be too hard on yourself as a couple years after that you will have recovered enough to take and pass those classes. Your life isn't over with this diagnosis it is just going to be different. But it will be a better different without the pain and moodiness. Eventually your family will understand and stop the eyerolls because they will see you healing. It will be hard socially but your social life was always tough anyway.  The important thing is you will get your health back and that is more important than grabbing a quick meal at a take out joint. Hang in there.
  • Upcoming Events