Ever since I started my gluten-free diet in about May 05 I've been extremely tired all the time.
At night I get about 7-8 hours of sleep, wake up at 6 and go to school for about 7 hours. Then as soon as I get home from school I'm too tired to stay awake and take 4-5 hour nap, then wake up to eat dinner, do homework, take a shower, then I get extremely tired again and go to bed.
I have noticed that when I wake up I don't feel well rested unless I get 14-16 hours of sleep at a time.
I started taking vitaims for some more enegry and eating a bigger, healthier breakfast but it doesn't really seem to help.
I hate this because if I don't take a nap during the day and I go out I feel dead and if I sleep I miss out on the whole day.
Is this a side affect of celiac disease or a gluten-free diet? Does anyone else feel like this?

I know that feeling - especially the missing out on the whole day part. Several months ago I started taking CoQ10 - it's an enzyme. For me the difference has been amazing. I am not running any races to be sure but I am not in bed all day either. I am getting more done and not feeling the overwheilming exhaustion that I had before. It might likewise help you. Claire

I get very tired. I do not have classes on Fridays and spend most of that day sleeping or doing nothing. I just feel tired and worn down. Your signiture says you are 15. I am a few years older and these years require a lot more sleep than 8 hours. In my recent health class my Professor said that most of our class, coming out of our teens, would be growing out of it but teens truly need more hours of sleep than adults and others. I think with our Celiacs and age that it's just harder for us.

have you had a work up to check for deficiencies such as iron? anemia caused me additional fatigue and symptoms such as chewing ice and restless leg syndrome. i have been gluten-free for 8 mos, and i am still very tired. i actually felt more energized before going gluten-free! the celiac nurse i work with has mentioned that it can take up to 2 years to really feel "normal" again. you may have an additional issue going on or it your body may very well still be in a transitional period and adjusting, beginning to heal etc. you could go back and ck with your doc... deficiencies can be cked with a simple blood test.

I agre with Jen, get check for other vit/etc diffecnies. They tend to go hand and hand with celiac disease esply Iron. Also tryin increasing the PROTIEN in your diet and decreasing carbs, esply sugar. Protein will give more gradual and lasting engery, and does not have the crash associated with high carbs foods, esply sugar. Also try cutting back on cafine, it has a simular crash effect for many ppl. Nothing beats carbs for quick fast energy, but it does not last long, protien is what you eat for engery to last.

Claire - do you mind elaborating on what CoQ10 is and where I can get it? My pcp wants to put me on folic acid rx due to family heart disease history and I'm already taking iron and B-complex. I want to ask the her if it's okay to add the enzyme too. I've got to get more energy or I don't think I'll make it through the holidays with much enthusiasm. Thanks in advance. You have been so helpful to me on many different threads.

i started taking q10 recently in hopes of being energized. i have a friend who said it did wonders for him. i think it has given me a slight boost...but still hard to tell at this point. either way, it can't hurt i am taking Natrol brand.

Thanks jenvan! Is this sold in drug stores, or only online or what? I've never heard of anything like it. I want to get some tomorrow or at least order it.

Vitamins helped me a lot, too, but the biggest thing that helped me was regular exercise.

I was dealing with serious fatigue all the time, more after I went gluten-free than before, weirdly enough. I decided exercise might help. I started with a two minute walk a day, and there were times I couldn't do it. But all of a sudden, my energy started to improve. I'm still pretty tired, but SO much better, and when I skip exercising for a few days, the fatigue comes back.

Among other things it could be sleep apnea. Only a sleep test will tell, but worth checking. I probably went 10 years that way before being tested. Now, I sleep well and awake rested.

Have you had your thyroid checked? I found out a few years ago that I have an underactive thyroid, and have been taking Synthroid daily since. It has really helped my energy level. I used to be so tired that by 2:00 pm I could barely keep my eyes open. Now between that and beginning to eat gluten-free I have more energy than ever.

I can relate to being tired all the time. It has gotten noticably worse for me since going gluten-free in 2/2004. I'm a vitamin junkie, including Co10 daily. I agree that when I exercise I have more energy and feel better, but that's probably the only thing that I have found to help. I hope that this desire to indulge in lots of sleep starts to taper off one of these days, b/c it does really cut into your life. I've had my thyroid checked, as well as all blood work.
--Kelly Langenfeld

I was feeling very fatigued and having aching in my legs. LIving on caffeine for survival to take care of my three kids. I had a full workup for vitamins and anemia. Actually my hgb was better then it has ever been. GUess the diet is working some. Anyway, I think it was because i was getting gluten. Make sure your thyroid is ok and I do exercise which can help some. Take vitamins, etc.
Monica

I'm fatigued a lot of the time too. I've been gluten free for ten months and the fatigue has gone up and down. Right now- I think because school just ended and the holidays, I am wiped. I just want to check into a bed and breakfast somewhere and sleep under a cozy down comforter for a few days and have a valet serve me gluten free meals. Ahhh....heaven. But since that's not going to happen, as my doctor says (after having tested me multiple times for thyroid and vitamin deficiencies), if you need a nap, take a nap. Your body is healing right now and it needs that rest. And if you are 15 you need even more. When I was 15, sleeping 12 hours on the weekends was the norm for my friends and I.

[quote name='quantumsugar' date='Nov 11 2005, 11:00 PM' post='76761']
Vitamins helped me a lot, too, but the biggest thing that helped me was regular exercise.

I was dealing with serious fatigue all the time, more after I went gluten-free than before, weirdly enough. I decided exercise might help. I started with a two minute walk a day, and there were times I couldn't do it. But all of a sudden, my energy started to improve. I'm still pretty tired, but SO much better, and when I skip exercising for a few days, the fatigue comes back.

I experienced something very similar. After I started my gluten-free diet, I got more tired. My fatigue turned into a real fatigue ( like somebody being very sick). Before, I was having a lot of second-effect symptoms like, getting the flu, having stomach pain, bone pain, constipation, gas... Now, I am pain-free but my energy is like a yo-yo. Sometimes, it feels like I am in a light coma. A real brain-fog, for sure!! I had to stop working out for 6 weeks. I was too weak. Now, I can walk 40 minutes a day, on the good days. Or, not walking at all, on the bad days. I made the decision to stop eating eggs, soy and milk, a week ago. It seems to help.

These are good things to know- I've got to get my buitt in gear about taking my vitamins and getting some exercise. I had some blood work done yesterday and my iron is a bit low. have you been checked for anemia? Just a thought. That could definitely contribute to fatigue.

And it would be nice if I could spell butt right- ahh...my good friend brain fog!

I mainly get tired and the brain fog after I eat, its like my body need to use all the energy it has to digest the food. It makes things really hard because if I need to go somewhere during the day I can not eat. On days I have something to do, like holidays when I have to be at familys houses, or days I have apts, I cant eat untill I get home for the day and know I dont have anywhere else to be. Right now I can not work, because there is no way I can live like that EVERY DAY. I do not need to take a nap, just sit or lay down. And on top of just getting wiped out from eating, If I have food in my belly and I have to go somewhere, my nerves set in, I have panic attacks, which make the D set in........Not good in public! Anyone else notice they get worse brain fog and fatigue after they eat, or just all the time?
-Jennifer

Jen- I've heard other people say that it takes a lot of their body's energy to digest their food, but not to the extent that you're saying. I can't help but wonder if you're getting hidden gluten somewhere. What have you been eating? Or maybe you have other intolerances. That sounds horrible! Does it happen even when you eat just plain rice?

It doesnt seem to matter what I eat, it just makes me tired. I dont have stomach symptoms, unless I have to go out in public, and thats my nerves. My diet includes, Fresh meats(burger, beef, pork, ham...has sodium & sugar added, turkey legs) Potatoes, rice, corn, eggs, some cooked veggies(fresh are too hard on my belly) and a few extras like Heinz Ketchup, Kraft Mayo, LaChoy Soy Sauce, olive oil, corn oil, Fleichmans Lite Marg, salt and pepper.
About a month ago I went to the doc for a yeast infection and mentioned that I have celiac disease and asked if a Candida overgrowth could be causing me some problems(before I went I was having D almost every day) The doc didnt say much when I told him I had celiac disease, but he was like Oh you do and he gave me 4x the reg dose of Diflucan, ever since then, I am still tired but the D has been pretty non existent, unless I have been really stressed.
I am hoping that I will slowly keep getting better, and start getting my energy back. Back in the day I use to be the most outgoing, spontaneous person you could meet, now I dread leaving the house and need at least 24 hour notice if I need to be somewhere, It really sucks to be such a boring person and it has started to take more and more of a toll on my relationships, romantic and family, friends are non-existent. You know how un-romantic it is to plan out sex days in advance, or when it does just start to happen, to have to say, wait honey, I need to poop! Really puts a damper on things! No such thing as going out together, not even going shopping together or anything, and then I get jealous when he wants to go out with out me, cause I know how boring I have become, but it still bothers me when he doesnt want to be home with me. Sorry to rant, just started and couldnt stop!
-Jennifer

No Jennifer- don't be sorry- it's good to rant! You need to. I feel the exact same way as you sometimes (about going out, sex, romance etc.) It's like, you're in the middle of an intimate moment and I say, "Oh honey, I'm so sorry but I am going to fart" (what I mean is "fart you right out of bed!" It's actually become a joke between us.

As far as your diet- you might want to try this. Just have foods you know are safe- meat, veggies and rice with salt and pepper and Fleishman's and olive oil- for awhile (actually experiment with the meat too. The nurse I had last night told me that beef makes her sick as a dog and I have a friend with Celiac's who can't tolerate pork).

Cut out all the stuff that are common allergens/intolerances like corn, potatoes, eggs, soy, and dairy (I know it sucks!) for two weeks. See how you feel. Then try adding things in back in one by one. If you have a reaction to it, go back to the basics for two weeks and then try adding something else in. Anytime you have a reaction, go back to basics for two weeks. I did this and it really helped (sort of- it made me realize that I wasn't intolerant to anything except when I'm glutened. Then I'm intolerant of EVERYTHING!).

Also, keep a food journal. Again, it's a pain in the butt but it really helps.

As far as the panic attacks go, does your doctor know? My sister and I both have them and they are treatable. At least feeling less anxious would get you out of the house.

Hang in there and know we're here for you, Beverly (I actually didn't take a nap today for the first time in about three weeks- oh wait! I slept 14 hours last night )

I agree withyou Berneses. I have found staying away from almost all starchy
foods is a must. The other method I use help with the fatique and leg pains
is an herbal supplement called Ginseng Energy Now. I get them at most
conveniant stores. I used to take a iron and vitamin c supplement called
Vitaron. I got those at the CVS drug stores in Jersey. Now that I am in Denver
I haven't been able to find them. They were better than the prescription iron the
Dr. had me on. The best thing for energy that saved me before my DX was metabolife
which you can't get anymore (not the original stuff). If anyone knows how you can
I would be indebted to you for life!

Jen we all know the feeling. I remember my best friend getting so mad at me because I
wouldn't go out with her as we had planned. Were you aware that all of these foods have
vinager which is usually a derivative of wheat?Heinz Ketchup, Kraft Mayo, LaChoy Soy Sauce,
pokerprincess

Yeah- good point. I can't tolerate vinegar made from grain (or alcohol from grain either) even though technically it's gluten-free. I can't eat Heinz ketchup, LaChoy makes me feel icky. But I can tolerate rice and apple cider vinegar (my favorite salsa is Green Mountain Gringo and it lists apple cider vinegar) and potato vodka. It's amazing how certain things can effect you. I got very sick from eating a salad in it last week that I thought had rice vinegar on it, but didn't. It had regular white vinegar.

This may sound dumb from someone who has been dx celiac disease for almost 5 years, but there is a difference between being allergic to wheat, and having celiac disease right? Is that why some CDs can tolerate the distilled vinegar and distilled grain alcohols, and others cant, the ones that can have a problem with the Gluten, which is all removed during distillation, and the ones that cant have a problem with the wheat, which can not be completely removed? Just a theory?
Oh, and I tried removing all things with Vinegar for a while and didnt notice a change.
-Jennifer

The difference, from what I have been told after allergy testing, is that wheat allergy is more of an anaphylactic reaction (hives, trouble breathing etc.) whereas Celiac's is not an allergy. It is an autoimmune disorder where your antibodies view gluten as poison and attck your small intestine in defense. Although I have been told that a wheat allergy can have digestive components too. Someone chime in here and correct me if I'm wrong.

As far as vinegar goes, it is TECHNICALLY gluten free because the gluten cannot make it through the ditillation process but some people can't tolerate distilled products. I can tolerate distilled products like apple cider and rice vinegar and potato vodka, but for some reason white vinegar makes me really sick. Basically, if I don't know the source of a distiiled product like vinegar or alcohol, I don't touch it because it makes me sick.

Jen, nothing sounds dumb.We are basically our own research group trying to figure it out on our own! Thank
god for this forum. At least I am past the point of considering myself insane. I talked to a woman at the research clinic in Maryland. She said that you can have celiac disease and it will have no effect on you at all: and then someone eles can be as sensitive to it that even touching can make them sick. We are chemicaly and genetically unique. There is no way establish any consistancy that we can rely on. We just have to do the best we can continue being so supportive of one another.
pokerprincess

Thanks! That makes a lot more sense!
-Jennifer

i'm another one who is always tired although the worst of the feeling of chronic fatigue has now been replaced by just feeling really sleepy and lazy. The sequence of events is that before realising the gluten connection to my problems i was always feeling stressed and rushed and in fact tests done when i lived in Australia had shown that i had elevated cortisol stress hormone levels, but not quite enough to qualify for Addisions. then after going gluten free there was a big positive in that my stomach smooth muscles started to churn food for the first time in years but a really heavy fatigue set in which lasted weeks. Used to just sit in front of tv feeling wasted, frequently with a headache. Then that heavily fatigued feeling turned into just feeling sleepy and lethargic - its still with me today, but i've always forced myself to maintain some physical activity. I'm really hoping to get out on my stomach motility encouraging device tonite (skateboard) - been raining the last few days, but i know i will have to force myself once the post evening meal sleepyness sets in. Once i get outside i know that in a few minutes some life will kick in to my body and there will be a definate mental health benefit too. Some ppl who know me have remarked that i am incredibly disciplined, i suppose i am when it comes to maintaining my daily activities but i do have a number of personality limitations which probably are reactions to my selfish discipline so i would not describe myself as a well balanced individual!

cheers,

Mr J

a friend sent me these 2 links. a combo of thyroid and adrenal insufficiency is causing her fatigue. The first link contains a page on adrenal insufficiency too. I don't have thyroid probs and if i had to bet i would say i don't have adrenal insufficiency either - its all too easy to look at a list of vague symptoms and convince myself thats the problem, nevertheless i 'm feeling a lot of low grade versions of the symptoms of adrenal insufficiency. The info says that some modereate excercise is ok :-) however i'm not ready to give up my ration of 1 cup of coffee a dayjust yet though.

cheers,

Mr J

symptoms of hypothyroidism not acknowledged by the medical community
http://www.stopthethyroidmadness.com/long_and_pathetic.html
also this site is about adrenals: http://www.vitaminmd.com/isocort.htm