Freaking Exhausted!

[realmaverick]

I'm six weeks in to a gluten free diet. I'm not really feeling any less exhausted and it's REALLY demotivating.

Last night I had about 10 hours sleep. I woke up feeling my usual tired self, but it was normal. I had some gluten free cornflakes for breakfast with semi skimmed milk and then had a shower. After the shower I started to feel really tired, I laid on the bed and couldn't get back up for over an hour. After a nap I finally managed to get myself out of bed but still feel knackered.

It's really starting to drive me insane now. I cannot focus on work, I just feel too tired and demotivated because of the tiredness. It's accompanied by brain fog too.

I'm wondering whether it's worth going on an elimination diet of Fruit, Veg and Meat? I don't imagine I'll have issues with any of those foods.

This is really going to ruin my life if I cannot WAKE UP. At this moment in time, I feel like I want to bash my head against a wall. I'm not sure why my body is being such a jerk.

Any advice or encouragement would be greatly appreciated.

Thanks

[kareng]

Have you had your iron, b12, d, etc checked? Being anemic or just low on b12 ( helps Red blood cells take oxygen). Also, healing an injury, like the damage to your intestines, can make you tired.

[lynnelise]

I agree with getting the vitamin levels checked. I needed B12 shots for the first few months I was gluten free just to make me feel alive!

[kareng]

I just checked your profile to see where you live. Didn't say. Saw you are taking vitamins. It's possible that if you are damaged enough,what you are taking isn't getting absorbed. Might want to stop by GNC and get some sublingual b. It goes right in through the skin under your tongue ( basically).

Might get some d3 and take it with food.

[realmaverick]

Have you had your iron, b12, d, etc checked? Being anemic or just low on b12 ( helps Red blood cells take oxygen). Also, healing an injury, like the damage to your intestines, can make you tired.

I had my Iron levels tested. They were right at the bottom end of low but my Dr felt they were still within the accepted range and my blood count was normal, so there was no need to concern myself. Would it still be worth taking an iron supp?

I'm taking a B complex which includes B12 at 10,000% RDA.

I agree with getting the vitamin levels checked. I needed B12 shots for the first few months I was gluten free just to make me feel alive!

Alive? Wow, I'd love to feel that, I've forgotten what it feels like.

I just checked your profile to see where you live. Didn't say. Saw you are taking vitamins. It's possible that if you are damaged enough,what you are taking isn't getting absorbed. Might want to stop by GNC and get some sublingual b. It goes right in through the skin under your tongue ( basically).

Might get some d3 and take it with food.

I'm in the UK, I'll look in to the sublingual b. I'm at whits end. I just want to feel awake and for this fog to disappear.

Thanks so much for all your suggestions

[Looking for answers]

My iron was recently tested and at the low end, my doctor also said not to be concerned with it. I was EXHAUSTED. I started taking Garden of Life's raw iron and I can't tell you how much better I feel. I no longer have a "medicated drug" feel. Also, I would probably switch to eating more protein. Just from a nutritional/blood sugar balance standpoint, corn flakes are not a good option, as they don't offer much nutritionally and also upset blood sugar balance in most people. I think you'll feel much better if you eat more protein and food with high vitamin values. I always do.

[jerseyangel]

Last night I had about 10 hours sleep. I woke up feeling my usual tired self, but it was normal. I had some gluten free cornflakes for breakfast with semi skimmed milk and then had a shower. After the shower I started to feel really tired

Are the cornflakes you are eating made on shared lines with gluten containing cereals? Sometimes we can become more sensitive to trace amounts of gluten as time goes on.

That is where I would start--go over all your processed foods and see if cross contamination may be at play. Better yet, omit them for a time and see if you don't feel better on whole foods.

[BoydBT]

You may be depressed. I have had two bouts of depression,

Feeling unmotivated, and being tired are two symptoms.

And celiac disease can cause depression and a multitude of other MI like symptoms. You may want to also check for thyroid malfunction. That can make you feel that way too.

BBT

[Mama Melissa]

i feel your pain, im on my 6th week as well and i do see a diff in my gi symptoms but i still feel unmotivated tired and possibly finding other food intolerances but not even sure at this point as my food diary really dosent point to an answer:(I was tested for diabetes,thyroid and blood counts were perfect sometimes i feel like theres no hope:( goodluck in your journey xoxo

[jenngolightly]

I'm six weeks in to a gluten free diet. I'm not really feeling any less exhausted and it's REALLY demotivating.

Last night I had about 10 hours sleep. I woke up feeling my usual tired self, but it was normal. I had some gluten free cornflakes for breakfast with semi skimmed milk and then had a shower. After the shower I started to feel really tired, I laid on the bed and couldn't get back up for over an hour. After a nap I finally managed to get myself out of bed but still feel knackered.

It's really starting to drive me insane now. I cannot focus on work, I just feel too tired and demotivated because of the tiredness. It's accompanied by brain fog too.

I'm wondering whether it's worth going on an elimination diet of Fruit, Veg and Meat? I don't imagine I'll have issues with any of those foods.

This is really going to ruin my life if I cannot WAKE UP. At this moment in time, I feel like I want to bash my head against a wall. I'm not sure why my body is being such a jerk.

Any advice or encouragement would be greatly appreciated.

Thanks

Maybe it's dairy. You said you felt regular tired when you woke up and then in the shower it hit you - AFTER you ate breakfast. Can you go off dairy for a week and then try it again? That's an easy elimination test that you can do on your own. Dairy is a common intolerance. No milk, butter, ice cream, yogurt, cheese, etc. for a week or two. You might start feeling better right away.

Like you, I was still exhausted after going gluten-free. But when I found my secondary intolerance I woke up immediately! My fog was gone and I didn't need any more naps. It was a miracle.

[realmaverick]

Thanks for the encouragement everybody. I don't know anybody with celiacs or issues similar to my own. It's difficult when everybody else just appears to be able to eat whatever they want and still feel fine.

Jenn, was dairy your secondary intolerance? I remember as a teen, everytime I eat cheese, my face would itch and breakout. Though that seemed to wear off as I got older. But maybe it's just showing itself in different forms.

I'm at the point now, where I'm doubting whether I'll ever feel awake and for the fog to be gone. It's just been so long now and nothing seems to work or help.

I've been and bought what appears to be a good iron supp, it's in a capsule form and I believe 50mg.

I'm going to be eating nothing but fruit, veg and meat for a few weeks. Though I already feel kinda sick at the idea lol

[tennisman]

I would definitely ask your doctor to test your Vitamin D levels . Feeling tired can be 1 of the many symptoms you can get with Vitamin D deficiency and as Vitamin D deficiency is linked with Celiac it's worth asking your doctor to check your levels

[jenngolightly]

Thanks for the encouragement everybody. I don't know anybody with celiacs or issues similar to my own. It's difficult when everybody else just appears to be able to eat whatever they want and still feel fine.

Jenn, was dairy your secondary intolerance? I remember as a teen, everytime I eat cheese, my face would itch and breakout. Though that seemed to wear off as I got older. But maybe it's just showing itself in different forms.

Yah, I haven't eaten dairy or soy or corn or grain or sugar or potatoes for 6 months. I feel more awake than I have for years and less sick in other ways, too. I had been sleepy all the time: Getting 10 hours sleep at night, naps after work, sleeping on the sofa all weekend... And I had 2 kids to take care of! Now I have so much energy that I can actually sleep 9 hours and take no naps. Also, I can play with the kids and even feel good enough to go bike riding. Miracle.

I'm going to stay on this diet for 6 more months and then try one of those foods at a time to see which one/s are the culprit.

Good luck on your diet. It's really hard (yours sounds similar to mine), but so worth it. I hope food is the cause of your tiredness - it's much easier to cure by cutting out the offending food than by taking meds.

[cassP]

there's A LOT of info out there suggesting that Corn & Dairy make it more difficult for someone with villi damage to heal.

a lot on here cannot tolerate soy.

many of us feel MUCH MUCH better on very little grains.

i, personally try to stick to a real healthy paleo type diet. i try to keep my sugar & grains to a MINIMUM. of course i indulge sometimes- but i always aim for that. i try to always have fruit or veggies & a healthy fat or meat with every meal. ideally- (for example)- for breakfast- i try to do a one egg omelette with real butter & veggies. if i dont have time, i'll do a piece of rice toast with real butter, or a rice cereal with walnuts & hemp milk & banana. if i just did a corn cereal with real milk- i'd prolly feel like crap and would be starved in an hour.

good luck with your diet & healing

[gf-soph]

I definitely second that you need to get your iron levels up, I have had significant problems with iron and b12 for years and I have learnt from experience that the levels where I am significantly affected are well within the low normal range. Crushing brain fog is all to familiar, and it makes it very hard to think clearly or be positive about things.

It's common to have trouble absorbing all sorts of nutrients early on. Iron supplements can be particularly hard to absorb so don't give up if you have trouble with the first one, I must have tried a minimum of 5 different pills and liquids over time. Also make sure you take it with some vitamin C if there isn't any in the tablet as it helps with absorption.

It may take some time to get the iron levels increasing. Look for chages in your brainf fog, overall energy, as well as changes in skin tone - a lot of people get quite pallid skin or dark circles under the eyes. I also notice that the skin just under the eyelid gets very pale when anemic, and gradually darkens as it improves. Also hopefully you can get your dr to rerun the iron levels after a while.

You have a couple of options of what to do now. You may not need to jump straight to an elimination diet, you could start off with the iron supplements and cut out dairy and see how you feel over the next month of so. With a past history of problems with cheese you may be sensitive to casein, so make sure you cut it out totally, don't just go lactose free. It's so common for people still healing from gluten damage to have problems with dairy, so it's a logical place to start.

Don't give up yet, I know how hard it is but you will find the combination that gets you feeling better. The best you can do is get a list of options, and gradually work through them until you find the combination that works best for you.

Good luck

Sophie

[GFinDC]

i feel your pain, im on my 6th week as well and i do see a diff in my gi symptoms but i still feel unmotivated tired and possibly finding other food intolerances but not even sure at this point as my food diary really dosent point to an answer:(I was tested for diabetes,thyroid and blood counts were perfect sometimes i feel like theres no hope:( goodluck in your journey xoxo

Hi Melissa,

It can seem kind of tough at times, or at least it did for me. But once I eliminated my other food intolerances things turned around. Now I eat mostly whole foods with a few organic or natural style processed foods. And I feel lots better since making that change, You might have the same turn-around in time also.

Thanks for the encouragement everybody. I don't know anybody with celiacs or issues similar to my own. It's difficult when everybody else just appears to be able to eat whatever they want and still feel fine.

Jenn, was dairy your secondary intolerance? I remember as a teen, everytime I eat cheese, my face would itch and breakout. Though that seemed to wear off as I got older. But maybe it's just showing itself in different forms.

I'm at the point now, where I'm doubting whether I'll ever feel awake and for the fog to be gone. It's just been so long now and nothing seems to work or help.

I've been and bought what appears to be a good iron supp, it's in a capsule form and I believe 50mg.

I'm going to be eating nothing but fruit, veg and meat for a few weeks. Though I already feel kinda sick at the idea lol

Hi RMav,

It sounds like you have a good plan to troubleshoot your symptoms with the restricted diet. Just remember to add foods back in slowly and not more than 1 at a time. That way you can detect changes in your symptoms easier.

By the way, here is a site with links to various celiac groups. They have one listed for England and one for Ireland. Probably not as active as this site. But you might find some local celiac groups to hang out with too. That is always handy as you can ask them about local doctors and restaraunts etc.

[dilettantesteph]

I was thinking that you were from the U.K. from your use of the word knackered. I don't think that Americans use that term. At least I get strange looks whenever I use that term over here. I would like to second Jersey Angels suggestion of a whole foods diet. You may be reacting to gluten cc of some of your processed foods. Some of us like me can't eat them without symptoms. I was unable to find a cereal which I could tolerate. Tricia Thompson did a study of contamination of gluten free grains over here which would probably apply over there too. I hope things improve for you.

[cap6]

I have been on iron supps since June & levels are still low - am I sleep 10 hours a day. I switched to liquid iron 3 weeks ago and have felt some better this past week. Just a thought?? Liquid is supposed to absorb faster.

[BoydBT]

Still could be depression.

[Mama Melissa]

gfin thank you for your helpful info i feel as though almost everything i eat causes a reaction i dunno maybe its my depression over this illness, it has a way of making you think your crazy:( I just cant live on fruit vegis and meats and no crackers or boxed things atalll i even seem to be reacting to fruits and vegis as well i feel like i cant win i think im going to make an appoint with the krogan health center here in nj who specialize in celiac and have them do a full checkup.

I just want to feel perfect and healthy and great like everyone else says after they start the gluten-free diet!People have a way of playing down this disease but it is a horrible disease to live with and i have a hard time excepting i have it and my kids have a chance of one day developing it because of me, im soo heartbroken about this:( sorry for the meltdown i just feel like people dont understand me:(

[kitgordon]

You've gotten a lot of good advice here - the one thing I would like to add is that corn flakes and skim milk may not be the best thing to get your blood sugar stabilized in the morning. I feel better if I have whole milk and fruit with my cereal, or have an egg with fruit and toast. A little protein and fat keep me going a lot better in the mornings.

[marleyboo2]

Thanks for the encouragement everybody. I don't know anybody with celiacs or issues similar to my own. It's difficult when everybody else just appears to be able to eat whatever they want and still feel fine.

Jenn, was dairy your secondary intolerance? I remember as a teen, everytime I eat cheese, my face would itch and breakout. Though that seemed to wear off as I got older. But maybe it's just showing itself in different forms.

I'm at the point now, where I'm doubting whether I'll ever feel awake and for the fog to be gone. It's just been so long now and nothing seems to work or help.

I've been and bought what appears to be a good iron supp, it's in a capsule form and I believe 50mg.

I'm going to be eating nothing but fruit, veg and meat for a few weeks. Though I already feel kinda sick at the idea lol

This is the first time I have ever posted on here not sure if this is where I post! I am in your exact shoes. I have been gluten free for 7 weeks and cant manage. I have been in the house for 2 months with no energy. There are others on here just like you. I am sick and sick of being sick and scared too. I have been muscle tested on all my foods and am on the best vitamins. I think it just takes time.... Your villi are flat and glued down and you are probably malnourished. You may also have hashimoto's Thyroiditis which largely accompanies this. It all makes you non-functioning. Here's to you and me getting our energy back!

[realmaverick]

Thanks for the masses of awesome advice. I really appreciate it. It's great to know I'm not alone or mad.

I don't know whether this is psychological or what. But it's only been a couple of days since I decided to start cutting out everything but meat, fruit and veg but I feel sick at the idea of eating. It's not that I'm not hungry and I could quite easily stomach a big mac right now. But the idea of eating meat and veg is just making my stomach turn.

I think the dairy, gluten free processed stuff, gluten free chocolate, was filling in the massive hole that I had from not eating gluten. Now I feel there is absolutely nothing I can eat, that even remotely interests me.

This really sucks but I'm gonna force myself to do it. Though I'm not exactly enthralled at the idea of a life of this. I just hope once I figure things out, I can at least be less restrictive than this.

Humph, I guess I need to be more positive. If I can at least start feeling AWAKE, then I'll at least feel more motivated.

[marleyboo2]

Thanks for the masses of awesome advice. I really appreciate it. It's great to know I'm not alone or mad.

I don't know whether this is psychological or what. But it's only been a couple of days since I decided to start cutting out everything but meat, fruit and veg but I feel sick at the idea of eating. It's not that I'm not hungry and I could quite easily stomach a big mac right now. But the idea of eating meat and veg is just making my stomach turn.

I think the dairy, gluten free processed stuff, gluten free chocolate, was filling in the massive hole that I had from not eating gluten. Now I feel there is absolutely nothing I can eat, that even remotely interests me.

This really sucks but I'm gonna force myself to do it. Though I'm not exactly enthralled at the idea of a life of this. I just hope once I figure things out, I can at least be less restrictive than this.

Humph, I guess I need to be more positive. If I can at least start feeling AWAKE, then I'll at least feel more motivated.

Just wanted to add that just because it is a veggie doesnt mean you wont react to it. I can't eat nightshades at all which is like peppers and tomatoes. Yes, I have been totally not eating at times just cuz I am sick of the food but I am more sick of being sick! And I also react to beef but not so much to chicken. Odd I know. I need to find organic beef I think.

[mushroom]

And I also react to beef but not so much to chicken. Odd I know. I need to find organic beef I think.

I cannot eat beef that has been corn-fed - have to stick to organic, grass-fed beef. I don't think cattle stomachs are designed to digest grains, and the lectins get into the tissue (it's the lectins that bother me, gliadin itself being a lectin). I call it cattle leaky gut syndrome