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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 :)

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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.

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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!

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      Exactly! Negative genetics can rule out celiac disease with close to 100% certainty. It takes tTg antibody testing and biopsy confirm the diagnosis in a genetically susceptible individual. 
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      What Dr. Gunn states is essentially true. It is a rule out measure. But be aware that to possess either of the two primary genes that have been identified with celiac disease (or both) doesn't necessarily mean that you have or will develop celiac disease. Almost 40% of the general population carries one or both but only about 1% of the general population will develop active celiac disease. It remains latent until triggered by some stress event which may or may not occur. So, there is a genetic component to celiac disease but there is also an epigenetic component. 
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      Have you had celiac genetic risk testing? A celiac genetic test is accurate with or without gluten in your diet. If you don't carry the celiac risk genes you can effectively rule out celiac disease for life. 
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      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
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