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    Do you have questions about celiac disease or the gluten-free diet?

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Hi,

This is my first time on here. I actually tested negative for celiac disease. However for the past 3 years i have been to numerous docotrs, specialist and other options trying to find out whats wrong with me. Im getting ready to have food allergy testing. Ive been on the gluten free diet for about 2months now (cause it seems to have alot of my symptoms) and it is the only thing that has made me feel remotely better, Ive only been sick twice in the past month versus everyday. Im 22 years old and I feel like im an 80 year old. Im so tired all the time. I want to take naps in the middle of the day, im ready to bed at 9pm and barely wake up to make it to up at 9am. (i sleep til like 830). I stay cold, im always prepared with a sweater or a jacket.

Does anyone have suggestions to not be tired or what it may be?

ive been tested for anemic

ive been tested for celiac

ive had thyroids tested

im not diabetic

ive had endoscopy, colonoscopy, hida scan, disida scan, ultra sounds, cat scans, CT scan

i had my gallbladder removed

Thanks for the help

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You sound an awful lot like me before I went gluten-free. I could nap for two hours in the afternoon, and still be exhausted. Go to bed, sleep for 12 hours, and then wake up exhausted.

They tested my thyroid a couple of times. Always came back fine. I went gluten-free, and gradually it went away, as did my other problems. After about 6 months, I stopped napping during the day (big celebration for me!!).

If they have not tested you yet for vitamin D deficiency, have them do it. I was low, and when I started taking a supplement, I noticed a huge difference within a couple of days. Also B12 helps with energy levels, so you can either have that checked or go ahead and start a good quality sublingual and see if it helps.

Turns out that even though my celiac testing came back negative, I very much have it. So, if the gluten-free diet is helping, stick with it. May be the answer to your troubles!!!

And welcome to the forum!!!!

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get the results for your iron tests and find out what they ran. they need to check levels in the blood as well as stores. other vitamin and mineral deficiencies can cause fatigue as well, so you may want to try to pursue further testing. (this includes things testosterone levels, regardless of your gender.)

do you know if the sleep you ARE getting is of decent quality? one of the things that had me so incredibly tired was restless leg (at first, not really noticeable while awake, but affected my sleep). a sleep study was helpful to determine if I was getting *good* sleep. exercise (at least two hours BEFORE trying to sleep can be VERY helpful as well. (and don't say "I don't have time" because you lose more time from the fatigue than you would doing the exercise. heavens knows I've been there! :) )

(for me, it was a combination of restless leg, low iron stores (the two are related), low testosterone, and chronic stress/lack of sufficient exercise)

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Yea I too get extremely tired and can literally sleep for 14+ hours and still want more after eating gluten.

It is the only real symptom i get from it. I have been to groups and normally celiacs have other symptoms that dominate there complaints, so I'll often assume i must not have it and go eat some gluten, then bang 3-4days of extreme tiredness.

I am booked in for my biopsy, so am meant to be eating gluten still but I can't eat it and do my degree so will put the testing off till after uni (will gluten chalenge before it for a couple of months).

Glad to see theres others with similar symptoms to me, makes me feel like i should really be giving the gluten free diet a go even if the biopsy comes back negative.

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Yea I too get extremely tired and can literally sleep for 14+ hours and still want more after eating gluten.

It is the only real symptom i get from it. I have been to groups and normally celiacs have other symptoms that dominate there complaints, so I'll often assume i must not have it and go eat some gluten, then bang 3-4days of extreme tiredness.

I am booked in for my biopsy, so am meant to be eating gluten still but I can't eat it and do my degree so will put the testing off till after uni (will gluten chalenge before it for a couple of months).

Glad to see theres others with similar symptoms to me, makes me feel like i should really be giving the gluten free diet a go even if the biopsy comes back negative.

SAME HERE been noticing this as I went off my diet. Before I naturally wake up after 6 hours now its more like 10, too much time slept away :blink:

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wow 17 is the longest I have done maybe even chronic fatigue?

gluten free is what helped me

not eating too much before bed and being hydrated really well, lots of water through the day before and at night so even while you sleep your reasonably hydrated has helped me alot too

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Is there any combo of vitamins that have helped anyone? I slept 28hrs last Thursday and Friday. I go tomorrow for food allergy testing.

Yes. As was mentioned, vitamin B12, and other B vitamins can do wonders for sleep cycles, energy, etc. Magnesium is another that has helped me tremendously (actually more than I can put into words).

Consider other intolerances and allergies too. Especially to the top allergens (soy, corn, dairy, nuts, etc).

The only other things in my experience, which caused such fatigue, were candida, and mono.

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I’m so glad I found this. I am SO tired. I started doing yoga because I’m too tired to even go on walks. It’s ridiculous. I’m 28, I used to run 5 miles a day. Now I can manage 20-40 minutes of mild yoga. I get tired at around 8 pm. By 12-1am I am a complete (nearly drooling) zombie. I wake up wanting to go back to sleep and sleep about 12 hours!! What is that!!! It’s ridiculous it’s making my depression worse and harder for me to function anywhere near normal. 

 

I try try to go gluten free but even accidental gluten incidences give me a near narcoleptic feeling. Ugh :(

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