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artsunshine

extreme fatigue after going gluten free

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Hi all,

i have confirmed celiac disease. I am 10 days gluten free now and never felt so bad! I sleep for 15 or 16 hours per day and i am still exhausted. I am so tired i cannot stay awake. Ive seen topics about gluten withdrawal, but i dont have classic symptoms, just extreme fatigue. Anyone else experienced this after going gluten free?  Before diagnosis i didnt have other sympoms except terrific bone pain, which is already better.  I am really scared what is going on. Could it be that i have also some other disease, like MS, or hashimoto and thats why i am so tired? I still have muscle twitches in my legs, i have  muscle fiber all the time even though i am not sporting at the moment. I increased magnesium and it doesnt seem to work. I am worried, and thank you for your kind replies.

Have a beautiful day. 

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If you are really eating gluten-free, you are healing.  Healing takes energy and sleep.  You may have really changed the ratio of calories, fiber, fats, etc, too.  It will probably take a few weeks to get everything working better.  Hang in there.

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Read our Newbie 101 thread under the "Coping" section.  It contains lots of great tips and advice.  

Karen's right (just reinforcing), your body needs to heal.  I would strongly recommend that your supplements are certified gluten free at least until you really get the gluten-free diet down.  Check all medications too.  Best defense is to rest and eat whole foods -- not processed.  Exercise gently for now and do not eat out (it's all about managing your risk of gluten exposure).  

Take care!  You will start to feel better.  We all have different issues, so healing times can vary.  

Oh, three to six months out, ask your GI to re-check your antibodies.  They should be on a downward trend.  Ask your doctor now to check for anemia, bone scan and other vitamin and mineral deficiencies.  I fractured two vertebrae two months after my diagnosis.  Yep, osteoporosis.  But I recovered.  Am back riding my bike long distances besides all the other stuff I like to do.  Anyway, that's part of the standard level of care you should expect from your doctor.  

https://www.cureceliacdisease.org/wp-content/uploads/341_CDCFactSheets7_PostDiagnosis.pdf

https://celiac.org/celiac-disease/understanding-celiac-disease-2/treating-celiac-disease/

Edited by cyclinglady

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It's still very early days yet, try not to worry. I was very weak before I was diagnosed. Have you had any blood work done? You could be anaemic, and may need to take iron tablets - but check first that you need them, because it can be dangerous to take them if you don't need them.  Your body has a lot of healing to do, the longer you are gluten free the more your body will heal.. 

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Yes i am low on ferritin (my level is 7) and low on Vitamin D (my level is 21,8). B12 wasnt checked. My calcium is in normal range. It is day 18 and i am still tired, it feels like constant flu. I dont sleep 15 hours anymore, but also am not feeling better. I hope this is just temporary. Fact is that i was undiagnosed so many years (i am 25 years old) and i have significant higher chances for lymphoma and small bowel cancer. Lets hope all resolves well. 

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Artsunshire,

You are obviously feeling down and that is understandable.  I want you to know that a majority of us went undiagnosed for years.  The odds of us developing cancer are slim and none.  At 25, you can heal.  You are one step ahead of me.  My bones will never recover because of my age -- 55.  

You need to find out if you hemoglobin (besides your Ferritin levels) are low.  Get copies of all your lab tests and continue to keep a record of all your  medical history from now on.  My doctor loves that i have all my history on hand.  Great when you see a new doctor.  

Your fatigue is most likey due to anemia.  I had at when i was diagnosed.  I had to take lots of breaks.  Had a hard time catching my breath.  I was exhausted.   I am an athlete and it was blamed on a genetic anemia, perimenopause and frankly.....just because i was a woman!  Call your doctor and ask about taking iron pills (gluten free) for a few months.  Or eat iron-rich foods.  

If the fatigue does  not improve in a month or so, ask for your thyroid to be checked.  

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thank you cycling lady! :) Yes, i probably have hashimotos, i will know more on 10th of january. My lab tests were high on TSH.  My hemoglobin is in normal range after one month of taking iron pills, but my ferritin stayed 7, which is really low. 

My bone pain is almost over, it still hurts a bit, but it is nothing comparing to 20 days ago. So this is a big plus! 

 I lost brother and sister due to car accident and trust me, not eating my favorite foods is the last thing that i could care. I love my parents so much that i am simply responsible that i dont die and prevent that as much as i can. That is why i am so scared. Thank you so much. 

 

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I fine myself taking alot of iron rich food, high fat foods, vitamin A rich foods to balance it out, I also find my fatigue comes back if I drop the do not get enough vitamin A, miss a B vitamin supplement, or just simply miss count my calories.  See about talking with a dietician and getting tested for deficiencies, a lot of use with celiacs disease have this issue due to damaged intestines and our inability to absorb foods and nutrients correctly. Each of us is different and we might have to eat stuff or supplement in a odd ratio to fix something.   Common ones are Magnesium, Iron, B-vitamins, Niacin, and a few others.

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