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

By Rachel W
in Coping with Celiac Disease

Recommended Posts

Rachel W Apprentice
Rachel W
Posted

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
Rachel W
Posted
  • Author

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
psawyer
Posted

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
AKcollegestudent
Posted

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
GFinDC
Posted

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
sandsurfgirl
Posted

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
katifer
Posted

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
Rachel W
Posted
  • Author

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
sandsurfgirl
Posted

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
afreeclimber74
Posted

+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
kare101
Posted

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
kare101
Posted

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.

Go to topic listing

  • 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. Wheatwacked
      - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium. A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake. With low D your body is not absorbing calcium from your food so it steals it from your bones. Heart has priority over bone. I've been taking 1...
    2. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ has very little gluten in it. Gluten is the carbohydrate storage protein, what the flour is made from, the fluffy part. Just like with beans, there's the baby plant that will germinate ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein. Wheat germ is the baby plant inside a kernel of wheat...
    3. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3. Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C. Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine. Weight...
    4. Florence Lillian
      - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free. I have a cupboard full of supplements that did not agree...
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      highly unlikely NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,355
    • Most Online (within 30 mins)
      7,748
    Amy Immerman
    Newest Member
    Amy Immerman
    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)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Wheatwacked
      Supplements for those Diagnosed with Celiac Disease

      By Wheatwacked · Posted

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • 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.