Still Having Problems With Energy Levels

[Carriefaith]

I have been gluten-free for over 6 months now. I have more energy than I used to before going gluten free but my energy levels are no where near where they were a year and a half year ago (Before I started having nasty symptoms).

I am just not the same person I used to be! I used to be able to play a 90 minute soccer game with no problem and now I am losing energy after 10 minutes of any type of exercise. When I excerise I feel weak and sometimes like I might pass out or something and afterward I feel like I haven't eaten in weeks!

I love to exercise and stay and shape but this energy problem is just getting in the way and making it very difficult.

I am still have GI problems. Eg. gas, bloating, and diarrhea. My medication seems to relieve most of the symptoms but there are still there sometimes especially if I forget a dosage. So the GI problems could be part of the problem. I don't know...

I just wanted to know if anyone else is having the same problems as me or is my body just going crazy!

Thanks for any replies!

-Carrie

[kathyhay]

My husband went to see a naturopath recently, and the Dr did bloodwork on him and found that he needs to eat more protein and less carbohydrates. The Dr recommended that my husband eat no carbs in the am, and have minimal carbs at lunch, and then have whatever he wants at dinner. My husband has type O blood, which means he should eat more meat anyway, according to the Dr. My husband has noticed an increase in energy during the day since trying this diet. Maybe this will help you too.

[Carriefaith]

Thanks! I'll try eating more protein and see if this helps.

-Carrie

[darlindeb25]

hi carrie--i think it would also be good for you to add a good multiple vitamin daily--be very careful which one you choose cause they are regulated like food ingredients--i use only "Nature Made" vitamins--they state they are gluten free on the bottle---also sweetie, its only been 6 months--it sometimes takes quite a long time for us to get back to a healthy person--give your body time to heal--celiacs is very dyvastating to our systems--i know i get tired easily still and i have been gluten-free for 3 yrs now--but then i am getting old too and i work in retail which means i work all over the place in hours--early one day and late the next--i think those kind of hours are hard on anyone--keep your chin up--- deb

[darlindeb25]

sorry carrie--my fingers get ahead of me sometimes and i thought i proofread that--anyways--vitamins arent regulated like the foods are here--watch out for gluten in them--sorry again deb

[tarnalberry]

There are some basic things to check for, like iron levels, thyroid levels, (and in my case, but much less common than the other two, testosterone levels). There are others, but I can't remember them at the moment. Has your doctor checked any of these?

[Carriefaith]

I was checked for iron and thyroid and they were fine (thankfully) and I have been taking a multivitamin and a calcium supplement (both are gluten-free) but I haven't been taking them faithfully. So maybe I should start taking them daily, hopefully that will help!

Thanks!

[hthorvald]

Carrie, in your initial post you mention that you still have bloating, gas and other GI issues, but your meds help with that. Two thoughts: are you inadvertantly ingesting glutens and are your meds gluten-free? My doc told me to take Tums for the calcium, since calcium pills upset my stomach, but Tums are NOT gluten free. I now take Viactiv and I'm fine.

I also agree that it takes time. I've been gluten free since May 3rd and I'm tired and still get tummy upsets. But lately, I've had more good days than bad. Since being diagnosed, I've had to readjust my thyroid and estrogen intake because now that I'm absorbing better, I was taking too much. My poor body has had to adjust to so many changes, that it took some time to figure out what it needed.

Be patient, you'll feel better soon. Oh, by the way, I've just started B-12 shots and they seem to help my energy level. You may want to try that.

Take care,

H.

[Carriefaith]

hthorvald,

Thanks for your reply! I am like 99.9% positive that I am not eating gluten and my medication is gluten free. I know when I have a gluten accident because a have a severe reaction. I have had a few accidents over the months and maybe those have set me back? I don't know......

[Scott Adams]

Actually I believe that Tums are gluten-free, unless something has changed recently. Please verify this before making claims one way or the other regarding the gluten-free status of an item and posting it on the boards...thank you!

Scott

[lovegrov]

At last check Tums was using the standard CYA -- the manufacturer does not put gluten in but they won't guarantee what comes from their suppliers. In other words, Tums should be gluten-free but don't sue us if a supplier gives us something contaminated.

richard

[MySuicidalTurtle]

I find that after a week of classes (I go M-Th) that I am just down. So, I spend most of the day just exhausted and resting. I am better after the day of rest though.

[llj012564]

I have been on the diet for 11 months and still find myself getting tired easily. I eat only fresh foods so no possibility of contamination. I have lost a significant amount of weight and am still losing so that may account for some fatigue but my Dr thinks it will eventually just pass given time. I know that Cronic Fatigue Syndrom can go with Ciliacs so it is possible that one may have to adjust to a lower enery level I would make sure that you and your Dr have examined all other possiblities for low energy b4 settleing with cronic fatigue. It can take years to recover from the damage done b4 going on the gluten-free diet. Thats something Im just starting to come to terms with myself. I was a very active person and this has been hard on me to allow my body time to heal. If you come up with something to try let me know Im game to try anything for added energy.

[Carriefaith]

Hey everyone,

I've now been 8 and a half months gluten-free and I'm still having problems. I've stopped taking the meds becuase they are not working anymore

My energy levels are still very low (I haven't excerized since September becasue I just don't have the energy) and I continue to have all of the GI problems and some additional problems as well

I am having a colonoscopy next week to see what's going on...... I'll keep you posted. I won't find out the results until December 13th or 14th or something.

Hopefully everything will be ok. I just want to get better

[aaascr]

I play soccer too, and usually eat a protein bar (nutiva hempseed) 1 hour before my game - and I take gluten-free taurine- country life (used drink it in energy drinks) at the same time. You don't get any kind of "rush" but I find that I do have the stamina it takes to play the game.

My energy level is not back either, although better so I understand your frustration.

Check to make sure you're getting enough protein and iron! I also eat a lot of small meals rather than only a few large meals. This works better for me - hope this helps!

Alicia

[Rikki Tikki]

I have the same type of problems as you. I had my doctor check my vitamin B levels, Vitamin K, and Folic Acid. Also have him/her check you for anemia. My body ended up with lower than normal levels of all these and I was put on medication for this. My levels still run low.

Also, be sure to have a bone density test because this disease can take the nutrients out of your bones as it did with me and I now take Fosamax.

I understand what you are saying, we finally find out what is wrong with us and it seems we sometimes get sicker and feel worse.

I wish I had some easy answer for you, just keep fighting and make sure you are taking vitamins and your medication.

My doctor put me on Bentyl one year ago, but I can't find it on the gluten free list. Just be careful of anything you put in your mouth and check the list regarding the medication you are taking. It is possible that something containing gluten is going into your system since you are still having symptoms.

Take care of yourself!

[Carriefaith]

Thanks for the advice!

I had some of my nutrient/vitamin levels checked two weeks ago and they were all excellent except calcium which was just ok. I take vitamins every day so I think this helped some. I am super paranoid about gluten getting in my system so I check everything (meds, vitamins, lip gloss ect). I'm like 99% sure I'm gluten free.

I don't know what's wrong........I wish I did though!

[OhNoes]

Medaka- have you tried eliminating anything other than gluten from your diet?

Before learning about celiac disease, I assumed I was just lactose intolerant. Getting off all milk products brought me a little relief from symptoms, but that was it- just a little. Now being off gluten and casein my GI symptoms are pretty much gone. Maybe you are intolerant to something else too.

Also, I've read that it can take a year or two for the gut to heal and recover from all the damage we did to it pre-gluten-free. With the intestine still so torn up, you're probably not absorbing all the nutrients/fat/calories that you take in, and that would leave you still feeling very tired. Dunno.

I feel the frustration with ya tho- patience is a virtue; just not one of mine.

[Carriefaith]

OhNoes! - thanks!

I am also lactose intolerant (or casein intolerant). I just know I don't tolerate dairy very well! I am also wondering though if I have any other allergies or intolerances. I'm thinking of elimanating other foods to find out. I know it will be hard but I'm desparate to get better! I'm going to wait until after my colonosopy results and then I'll decide if I'm going to do the elimination diet.

[Dewilda]

I have been gluten-free for over 6 months now. I have more energy than I used to before going gluten free but my energy levels are no where near where they were a year and a half year ago (Before I started having nasty symptoms).

I am just not the same person I used to be! I used to be able to play a 90 minute soccer game with no problem and now I am losing energy after 10 minutes of any type of exercise. When I excerise I feel weak and sometimes like I might pass out or something and afterward I feel like I haven't eaten in weeks!

I love to exercise and stay and shape but this energy problem is just getting in the way and making it very difficult.

I am still have GI problems. Eg. gas, bloating, and diarrhea. My medication seems to relieve most of the symptoms but there are still there sometimes especially if I forget a dosage. So the GI problems could be part of the problem. I don't know...

I just wanted to know if anyone else is having the same problems as me or is my body just going crazy!

Thanks for any replies!

-Carrie

[jenvan]

Carrie- I"m in a similar spot as you, gluten-free 8/9 mos, iron/thyroid/vitamin levels all okay. I think I have hypogyclemia, which I am exploring right now, but other than that, no real ideas on why my energy hasn't improved more. I am still persistently tired, like you. I have been meeting with a nurse who has had Celiac for 10 years, she is working with just Celiacs, very knowledgeable. She asserts that 2 years is how long it often takes to truly feel like you are "normal", so she tells me at this point, the fatigue is still not surprising...that we are still relatively new in the gluten-free sense... Wish I had a quick fix! At this point, if all other ideas turn into dead ends, I say we keep perserving and assume time is what we need...

[jerseyangel]

Jen and Carrie, Have either of you tried sublingual Vit. B12? I found it to be helpful with my fatigue. After nearly 6 mo. gluten-free, I was still tiring very easily and had a low energy level despite the fact that other symptoms were improving. I tried it about 2 weeks ago and noticed a definate difference in my energy level. I didn't get tired to the point of wanting to go to bed at 5 PM! BUT...After a few days, I noticed I also wasn't sleeping as well--like I was having trouble settling down. I switched to a tablet form of the B12 to take daily and I'm going to use the sublingual as needed only. So far, this approach is working beautifully for me and I plan to continue on with it.

[jenvan]

thanks for the tip jersey! i haven't tried sublingual...just some pill form...started that recently. i also started coenzyme q10 too. we'll see what i find once i am hitting them consistently for a bit. i had also seen a few peeps who rec. emergen-c and loved it. i tried it once, just made me queasy! but its been good for some. (not all flavors are gluten-free).