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

Will I Ever Have Energy?


Rachel W

Recommended Posts

Rachel W Apprentice

I am so worn out ! Dizziness, restlessness, I feel like even if i could sleep for a week i would still be tired, i feel like i have no strength , even the tone in my arms is gone ! Been gluten-free for about 2 months and I am so dizzy if i turn my head qiuck to look at something i half ways black out and see purple ! Is this normal? I know everyones healing time if different, just wondering how long its taken other ppl . Thanks :)


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



Celiac.com Sponsor (A8-M):



Rachel W Apprentice

I am so worn out ! Dizziness, restlessness, I feel like even if i could sleep for a week i would still be tired, i feel like i have no strength , even the tone in my arms is gone ! Been gluten-free for about 2 months and I am so dizzy if i turn my head qiuck to look at something i half ways black out and see purple ! Is this normal? I know everyones healing time if different, just wondering how long its taken other ppl . Thanks :)

Sorry bad typing and misspelling !

psawyer Proficient

No worries about your typing and spelling. Your message was clearly understandable.

Two months in, you should be seeing improvement. Are you sure you are not still getting gluten from something you haven't identified yet?

AKcollegestudent Apprentice

Double check all your shampoos, body washes, etc. I'm just coming out of a really fun reaction to my body wash and face wash.

GFinDC Veteran

Sorry bad typing and misspelling !

Eww, I jest hait bahhd tiping an speelng! :=) Macks me git awl krazy!!! :)

I got back some energy when I went soy free this year, after 2 years of up and down spurts. Soy is so bahhd for peeple. But you could have another food intolerance besides gluten is the point. So, make sure first you have really got rid of the ahlll the glutan, then look at awl thah possible symptom causers, (food intolerances).

I half some nurve daiamge in my left arm wich maks it hard to type rite. So itz kind uh fun to do it rong on perpuse fer a chainge. Not making fun of you at all. If yuz wanner c sum bahhd speeling, chek out the funee paigez thread in the gab chat forrum. Dey speel wreal bahhd!

The Funny Pages - Tickle Me Elbow Where Silly-Yaks come to let their hair down

sandsurfgirl Collaborator

My dizziness was due to electrolyte imbalance and dehydration a huge issue with anyone who has an autoimmune disorder.

I tried several different natural electrolyte replacements and they made me very sick. I also tried the homemade thing with salt and lemon and eating things like avocadoes and bananas. Didn't work at all.

The only thing that worked for me and has been LIFE altering was... good old Gatorade. I drink about 16 ounces a day. People give me a ration for it on here because it's not natural blah blah blah, but it has changed my life and I am functional because of it. People keep saying it has high fructose corn syrup. It does NOT. Not ONE type I've tried has had it in there. And it's way cheaper. Those natural types set me back a ton of money.

Whatever you decide to do, treat dehydration and see if it solves your problems. I ran out of it for a week and was fine, but today I was dizzy again so I got some and it cleared it right up. Drink water all day long, not just when you are thirsty. The 8 glasses a day is minimum so try to have more than that.

katifer Apprentice

I am so worn out ! Dizziness, restlessness, I feel like even if i could sleep for a week i would still be tired, i feel like i have no strength , even the tone in my arms is gone ! Been gluten-free for about 2 months and I am so dizzy if i turn my head qiuck to look at something i half ways black out and see purple ! Is this normal? I know everyones healing time if different, just wondering how long its taken other ppl . Thanks :)

I just want to say the same thing happened to me..very dizzy ,tired..etc. I have been gluten free for over two years and i felt some relief from my chronic pain but the dizzy-ness etc. was hard. My nutritionist encouraged me to look into reactive hypoglycemia(he had me start taking chromium and stay away from ALL sugar cane)--he said that the gluten intolerance can really make a mess of your blood sugar and just try to eat low-glycemic food until my body became more healthy...it has taken a while because i love sugar and i struggle to stay away...but when i do there is NO exhaustion and no dizziness. I do not eat dairy which has also helped. Hope you feel relief soon.


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



Celiac.com Sponsor (A8-M):



Rachel W Apprentice

WoW thank u guys so much for your suggestions !

I feel like i have taken all the precautions i can, I even stopped using the wooden spoons/ cutting boards that I use for my husbands Gluten containing foods because I thought i may get some mixed in with mine.

:blink: Like I said my guts feel better its just the lack of energy and dizziness that are killin me ! I am taking Iron and Vit B12 and the only difference I see is my urine LOL TMI but still the truth ! So I guess cutting out the sweets till my body heals is next? Darn and I was SSOOOO excited about gluten free brownies !.... ;)

sandsurfgirl Collaborator

At the risk of being a pain, DE HY DRA TION!!! :lol::lol:

Treat yourself with electrolytes and lots of water and tell us how you feel in a few days. Seriously. Try it.

afreeclimber74 Rookie

+1 on the dehydration. Most people walk around dehydrated and don't realize it.

Rachel, I had the same things going on as you: stand up too fast and see lights, dizzy, etc. For me the answer was iron supplements. Blood test showed me to be anemic.

If you haven't had a full panel of blood work done, you should.

kare101 Newbie

I am so worn out ! Dizziness, restlessness, I feel like even if i could sleep for a week i would still be tired, i feel like i have no strength , even the tone in my arms is gone ! Been gluten-free for about 2 months and I am so dizzy if i turn my head qiuck to look at something i half ways black out and see purple ! Is this normal? I know everyones healing time if different, just wondering how long its taken other ppl . Thanks :)

I am soooo with you!! It's only been a week for me, and I just have slight dizziness, but the fatigue and insomnia are really getting me down. Finally slept a good 11 hours last night. Felt fairly good when I woke up. Ate my gluten free breakfast of eggs and coffee. Now all the nausea and especially fatigue are back. Feel like I don't want to eat anything. I'm going to try the gatorade. Had another issue once where I needed it, and it totally cured me. Makes sense to me. I hope it works, and I hope you find what works for you. Take care.

kare101 Newbie

My dizziness was due to electrolyte imbalance and dehydration a huge issue with anyone who has an autoimmune disorder.

I tried several different natural electrolyte replacements and they made me very sick. I also tried the homemade thing with salt and lemon and eating things like avocadoes and bananas. Didn't work at all.

The only thing that worked for me and has been LIFE altering was... good old Gatorade. I drink about 16 ounces a day. People give me a ration for it on here because it's not natural blah blah blah, but it has changed my life and I am functional because of it. People keep saying it has high fructose corn syrup. It does NOT. Not ONE type I've tried has had it in there. And it's way cheaper. Those natural types set me back a ton of money.

Whatever you decide to do, treat dehydration and see if it solves your problems. I ran out of it for a week and was fine, but today I was dizzy again so I got some and it cleared it right up. Drink water all day long, not just when you are thirsty. The 8 glasses a day is minimum so try to have more than that.

This is the second time today I'm taking your advice! Thanks so much!:) Will all different kinds of gatorade do the job? Can't wait to try it. I'm going to have my husband get me some on his way home from work today!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      how much gluten do I need to eat before blood tests?

    2. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      how much gluten do I need to eat before blood tests?

    4. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Curious question

    5. - Amy Barnett posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Question

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748

    avery144
    Newest Member
    avery144
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
    • Jmartes71
      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
×
×
  • 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.