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I've been gluten free since October 2007 and for the most part I feel better - well no pain and my stomach doesn't look like a balloon - but I am still having lots of problems with my energy level. First of all, it's low, all the time, possibly due to not absorbing iron, that was one of the first things my docs noticed, was that I had zero iron. I think since going gluten free I have a little more energy level, but definitely not a normal level.

That's not the problem though, my energy dips LOW, like I can't hold my head up, keep my eyes open, really low. Not that I feel a little sluggish, I mean suddenly I'm doing a head jerk kind of low out of nowhere. I've tried to combat this by eating often and eating things that are supposed to burn off slowly (not cause a sugar spike). Right now on a typical day I will eat every hour to two hours...not a meal, just a snack, with my main meal being lunch.

Does anyone else have this problem? I've since moved since I was diagnosed but I emailed the doc who diagnosed me, he said to have my bloodwork re-done to make sure I am not getting some gluten accidentally. I know I have not purposely ingested any since October and I'm pretty confident as I am super careful at home and we rarely eat out. And I don't have the normal gluten symptoms, only this energy problem.

Hope someone can help - thanks!


Gluten free since October 2007

Houston, TX

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I can't tell if you are taking an iron supplement but if your iron is that low you should be on a good prescription formula. It'll likely take 6-12 months to get your iron levels back to normal. B12 will also help with your energy levels. I give myself injections twice a week but a lot of people take supplements. I also really love the Blueberry B Monster shakes from Odwalla.


---------------------------------

MP - celiac for 10 years

 

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Afraid I can't help, but I have it too. I attribute it to my rheumatoid arthritis though, which has flared up. It is like everything I do, even keyboarding, is in slow motion. Legs are weak, arms and shoulders are weak and I fall asleep in a chair, zonk, at the drop of a hat. I am thinking of asking for a blood panel to check for dietary deficiencies because I can't get anything done. I just wander around like a zombie, brain unfocused, sometimes hard to hold conversation. Definitely no fun to be around


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

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No I am not taking an iron supplement, however I do take Centrum Multivitamins everyday, and I am careful to eat iron rich foods with vitamin c foods for absorption. I thought I would be able to absorb nutrients by now, maybe it takes a bit longer.

I do fall asleep at the drop of a hat during the day - at my desk - I am surprised my head hasn't hit my keyboard yet. And it's like it's uncontrollable, it's not that I can get up and walk around to wake up. It's like I'm fighting sleep as I'm trying to walk around - its a struggle to keep my eyes open. But it comes suddenly and at different times during the day.

As far as being unfocused and all around exhausted, I had those symptoms before I was diagnosed. I had just moved from the states to the UK and I thought I had jet lag for 5 months...I couldn't concentrate to work at all. Now I feel better, except for the sudden drops in energy.


Gluten free since October 2007

Houston, TX

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I'd get your iron stores (not just hemoglobin) and other vitamin levels checked again to see where they are now. If your iron is that low you can't rebuild it with diet alone and even with supplementation it can take months before your iron stores are replenished sufficiently. Here's a good article: http://www.familydoctor.co.nz/conditions.a...gory_name=&

I'm shocked that a doctor would notice that you have zero iron and not put you on a supplement and worse that they wouldn't want to follow up and check your iron again in a month or two. That should've been a serious concern. When I was severely anemic I was in every two weeks for a year getting my levels checked.


---------------------------------

MP - celiac for 10 years

 

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Had the same problem for a number of months. One of our members here suggested I try

B complex and it worked wonders. I'll still, well it feels like passing out, get weak and sleep from time to time but it seems to be diet related if I take in too many carbs.

good luck

ken

No I am not taking an iron supplement, however I do take Centrum Multivitamins everyday, and I am careful to eat iron rich foods with vitamin c foods for absorption. I thought I would be able to absorb nutrients by now, maybe it takes a bit longer.

I do fall asleep at the drop of a hat during the day - at my desk - I am surprised my head hasn't hit my keyboard yet. And it's like it's uncontrollable, it's not that I can get up and walk around to wake up. It's like I'm fighting sleep as I'm trying to walk around - its a struggle to keep my eyes open. But it comes suddenly and at different times during the day.

As far as being unfocused and all around exhausted, I had those symptoms before I was diagnosed. I had just moved from the states to the UK and I thought I had jet lag for 5 months...I couldn't concentrate to work at all. Now I feel better, except for the sudden drops in energy.


"Ryo tatereba mi ga tatanu"

If we try to serve both sides, we cannot stand our own ground.

Japanese proverb

Celiac.com - Celiac Disease Board Moderator

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Yes it does feel kind of like passing out...but without the cold sweats.

I will have to get my bloodwork re-done. I may still not have any iron. Other than the complete lack of iron, he said I wasn't so bad off, the scarring from the Celiac's wasn't very bad....my antibody levels were not so high as he'd seen in other Celiac's. That's kind of why I thought enough time had passed for me to be absorbing things again.

This is going to be a challenge as I've just moved to Chile and I don't speak enough spanish to discuss medical issues.

Thanks to everyone, you are always a good help on this site.


Gluten free since October 2007

Houston, TX

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Symptoms like this are actually what led to my celiac diagnosis. My iron levels were also VERY low as well as my b12. I tried supplements for a month and when my blood work showed no improvement my doctor set me up with weekly infusions of iron (5 weeks - just finished Friday!) and weekly b12 shots. I seriously recommend you talk to your doctor about this kind of treatment because in these 5 weeks I've noticed fewer instances of falling asleep suddenly and a slow but steady increase in my overall energy level. We did follow up blood work last Friday and I will know for sure how much of a difference it made in my iron and b12 levels within a day or two.

I'm not sure where your iron levels were at but my doctor said he would recommend the iron infusions if my iron saturation levels came in below 10, the normal range is 15-25 I think. Initially they were at 5 then after a month of supplements they came back at 4. As much as getting an IV every week for two hours isn't a lot of fun I am very glad I did it because I'm already seeing results.

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I agree with everyone and the B vitamins. I take a sublingual (bypasses your digestive tract) b12 and that has helped, along with some magnesium and added a B complex. At my worst, I could not stay awake either. I have a DS almost 3, and I would have to put him to bed because I couldn't watch him. And I would take a nap, only to wake up with still no energy. I wasn't tired, but I felt like every muscle in my body was atrophied. The change in my diet was the beginning, but the addition of the vitamins and magnesium has really been the turning point for me.

I try now to see how many days a week I can go not taking a nap. It's usually only 2 now; 3 on a really busy week. Such a vast improvement from every day. And when I do nap, I wake up feeling refreshed. Now, I think that when I need to nap it's more because I have a small child and I am actually tired!!

I hope you get some relief soon!


Be yourself, everyone else is taken.

Oscar Wilde

Gluten free November 2007

IgA Deficient, Neg Bloodwork, Double DQ2 Positive

Dietary and Genetic Diagnosis June 2, 2008

Soy free Jan 09

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The cold sweats are worse for me than the passing out. Which if I do here in Tokyo seems normal although falling asleep on the train and circling tokyo for 3 hours is not fun.

Used to be able to set my clock by when i would wake up to change my tshirt.

the vitamins have helped that too.

If you do get some blood work, it might be good to check hormone levels which for me, as a male, was a problem. Had to go though a few weeks of replacement therapy as I had only a trace left.

ken

Yes it does feel kind of like passing out...but without the cold sweats.

I will have to get my bloodwork re-done. I may still not have any iron. Other than the complete lack of iron, he said I wasn't so bad off, the scarring from the Celiac's wasn't very bad....my antibody levels were not so high as he'd seen in other Celiac's. That's kind of why I thought enough time had passed for me to be absorbing things again.

This is going to be a challenge as I've just moved to Chile and I don't speak enough spanish to discuss medical issues.

Thanks to everyone, you are always a good help on this site.


"Ryo tatereba mi ga tatanu"

If we try to serve both sides, we cannot stand our own ground.

Japanese proverb

Celiac.com - Celiac Disease Board Moderator

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Okay I have a doctor's appointment today...

I need to check iron stores vs regular iron? Is there some medical terminology for that?

Also get the endomysel and tissue transglutaminate levels done to see if I'm accidentally getting some gluten.

And hormone levels?

And regular vitamin panel for the B vitamins and such.

Anyone recommend anything else I should ask for? I typically pass out when giving blood, yes I am a wheenie, so I want to get everything I can in one go.


Gluten free since October 2007

Houston, TX

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Didnt catch if your male or female but check your testostorone and other hormone levels.

I was amazed at the difference after getting mine replaced.

ken

Okay I have a doctor's appointment today...

I need to check iron stores vs regular iron? Is there some medical terminology for that?

Also get the endomysel and tissue transglutaminate levels done to see if I'm accidentally getting some gluten.

And hormone levels?

And regular vitamin panel for the B vitamins and such.

Anyone recommend anything else I should ask for? I typically pass out when giving blood, yes I am a wheenie, so I want to get everything I can in one go.


"Ryo tatereba mi ga tatanu"

If we try to serve both sides, we cannot stand our own ground.

Japanese proverb

Celiac.com - Celiac Disease Board Moderator

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Okay I have a doctor's appointment today...

I need to check iron stores vs regular iron? Is there some medical terminology for that?

Also get the endomysel and tissue transglutaminate levels done to see if I'm accidentally getting some gluten.

And hormone levels?

And regular vitamin panel for the B vitamins and such.

Anyone recommend anything else I should ask for? I typically pass out when giving blood, yes I am a wheenie, so I want to get everything I can in one go.

Not sure about the other tests but here is the skinny on the iron tests. There are 4 tests: (1) a CBC to check your hemoglobin and hematocrit. (2) Ferritin (iron stores); (3) Iron study that checks your total iron, % saturation, and total iron binding capacity or TIBC; (4) Folic Acid Test.

Hemoglobin is a protien that carries oxygen through the body. (This is what your Dr. is testing for when they prick your finger and say things like your 10.1 so you're anemic.) Your body needs iron to produce hemoglobin so the ferritin test will tell your doctor how much iron is actually present in your body. The iron studies will tell you how well your body is processing the iron. The Folic Acid test will give you your b-12 level which is important for identifying what type of anemia you have.

A Comprehensive Metabolic Panel (CMP) will test your liver and kidney function, electrolyes, etc. and might be useful - my Dr. runs one every year when I get my physicial.


---------------------------------

MP - celiac for 10 years

 

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I got the results back - the only thing that's fast in Chile - and everything is within the normal range.

So it's not B vitamins, it's not Iron....

The gastro doctor I went to immediately said it was stress, that it had nothing to do with absorption, guess he was right.

Thanks to everyone for the advice. I picked up some B vitamins anyway, maybe they will help regardless.


Gluten free since October 2007

Houston, TX

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Guess its good and bad news. Good that the levels are normal but you still need to find out why your passing out. Too many doctors make assumptions that its stress or some other catch-all thing. Had to tell one HMO doctor to never assume as it makes an -

ASS of U & ME B)

These days when I pass out -- like on the train here in tokyo yesterday, its just form lack of coffee.

good luck!

I got the results back - the only thing that's fast in Chile - and everything is within the normal range.

So it's not B vitamins, it's not Iron....

The gastro doctor I went to immediately said it was stress, that it had nothing to do with absorption, guess he was right.

Thanks to everyone for the advice. I picked up some B vitamins anyway, maybe they will help regardless.


"Ryo tatereba mi ga tatanu"

If we try to serve both sides, we cannot stand our own ground.

Japanese proverb

Celiac.com - Celiac Disease Board Moderator

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