Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Still Having Problems With Energy Levels


Carriefaith

Recommended Posts

Carriefaith Enthusiast

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



kathyhay Apprentice

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 Enthusiast

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

-Carrie

darlindeb25 Collaborator
:D 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 Collaborator
<_< 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 Community Regular

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 Enthusiast

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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



hthorvald Rookie

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 Enthusiast

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......

  • 1 month later...
Scott Adams Grand Master

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 :rolleyes:

lovegrov Collaborator

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 Enthusiast

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 Newbie

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 Enthusiast

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 Apprentice

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 Explorer

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 Enthusiast

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 Rookie

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 Enthusiast

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.

  • 1 year later...
Dewilda Newbie
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 Collaborator

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 Proficient

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 Collaborator

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).

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,694
    • Most Online (within 30 mins)
      7,748

    VJM
    Newest Member
    VJM
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Gigi2025
      Since 2015 we've spent extensive time in Italy and I've been able to eat their wheat products without incident. Initially, I was practically starving thinking foods in Sicily were not gluten-free.  An Italian friend who had lived in the US for over 20 years said she had celiac/gluten-free friends from the US who could eat Italian wheat products without problems. Hesitantly, I tried little by little without issues.  A few years later at a market, I asked a bread vendor if they had gluten-free loaves. Turns out she had lived in LA, said groups believe it's not the gluten that's causing our bodies harm, but potassium bromate; these groups have been trying to ban it.  Bromines and other halogens wreaks havoc to our endocrine system and, more specifically, our thyroids and immune systems. When bromines are ingested/absorbed into the body, it displaces iodine causing other health issues. Potassium bromate is a powerful oxidizing agent (dough 'conditioner') that chemically changes flour to enhance elasticity, bleaches the dough, and ages the flour much faster than open air.   Shortly thereafter while visiting friends in California, one family said they had gone gluten-free and the difference was incredible. The reason they choose this path was due them (a biologist/chemist/agriculturist scientist) having to write a portion of a paper about a certain product for the company he worked. Another company's scientist was directed to write the other portion. All was confidential, they weren't allowed to know the other company/employee.  After the research, they learned gluten was being removed from wheat, sent elsewhere, returned in large congealed blocks resembling tofu, and then added to wheat products. Potassium bromate has been banned for use in Europe, China, and other countries, but not in the US. Then we have the issues of shelf preservatives and stabilizers. What are we eating?  Why? We spend long periods of time in Italy and all has been good.  We just returned from an extended time in Greece;  no issues there either.  There is a man there we learned about on a travel show about Greece who walks the hills, picking herbs, pods, etc.  He is a very learned scholar, taught at the university level in Melbourne. It took a few days to locate him, but were finally successful. He too, is concerned about the additives and preservatives in American food (many of his customers are Americans, haven't been in the best of health, and have become healthier after visiting him). He suggested taking a food product from the US and the same product in Europe, and compare the different ingredients. Then ask why these things are being allowed in the US by the 'watch dog' of our foods and drugs. It would be amuzing if it weren't tragic. I'm presently looking for flour from Europe that I can make my own bread and pasta as the gluten-free bread is now $7.99 a (small) loaf.  BTW, studies are showing that many gluten-free individuals are becoming diabetic. My guess is because the gluten-free products are high in carbs. This is only my experience and opinion garnished by my personal research.  I hope it helps.  
    • knitty kitty
      Symptoms that get worse if you don't supplement is a sign of malabsorption, possibly due to Celiac disease. Blood tests for nutritional deficiencies are not very accurate, and should be done when you have been off of supplements for eight to twelve weeks, otherwise the vitamin supplements you've taken will be measured.  The blood circulation system is a transportation system.  It transports the vitamins you've absorbed around the body, but blood tests don't give an accurate picture of the vitamin and mineral stores inside organs and tissues where they are actually used.  You can have "normal" blood levels but still have deficiencies.  This is because the brain demands stored nutrients be put into the blood stream to supply important organs, like the brain and heart, while other organs do without.   If you are taking Thiamine Mononitrate in your supplements, you are probably low in thiamine.  Thiamine Mononitrate is used in many supplements because it won't break down sitting on a shelf.  This also means Thiamine Mononitrate is difficult for the body to utilize.  Only thirty percent of Thiamine Mononitrate on the label is absorbed and even less is able to be utilized by the body.  A different form of Thiamine called Benfotiamine has been shown to promote intestinal healing.   Talk to your doctor about doing a genetic test to look for Celiac markers.   I'm concerned that if you do a gluten challenge (10 grams of gluten per day for a minimum off two weeks) in your weakened state, the nutritional deficiencies will become worse and possibly life threatening.  
    • ElisaAllergiesgluten
      Hello, good afternoon!   I apologize, I didn’t see a notification and I’m just reading this. Thank you so much for sharing your thoughts and the link. Yes you are absolutely right, even so trying to get a response from them has been extremely difficult. They don’t answer but I will your practice of “guilty until proven innocent.”   I like and have a sense of trust here in this website, everyone is honest and thoughts are raw. The mutual understanding is amazing!   thank you Scott!
    • Scott Adams
      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.