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No Energy. What Am I Missing?

charlieroseburns

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charlieroseburns Rookie
charlieroseburns
Posted

I have been diagnosed with celiac for several months and am living gluten free. But my lack of energy (muscle and joint paint) is ruining my life. I'm taking b-12 and vitamin d to help with deficiencies and calcium because I cut out dairy. Have you found something for energy levels or body and joint pain. I eat well. I see a dietician regularly. I cook at home so my diet has been good. I am just so tired of feeling sick.

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cyclinglady Grand Master
cyclinglady
Posted

Time. You need more time. Most people on this forum report that it takes one to three years to heal.

Hang in there!

SMRI Collaborator
SMRI
Posted

Has your thyroid been tested?

beth01 Enthusiast
beth01
Posted

Nine months gluten free and I still am not feeling well. It takes time. Depends on how long and how sick you were before diagnosis. Keep a food and symptom diary, some people have other food intolerances that can also cause some of the same symptoms as gluten. Good luck, and I hope you feel better soon.

nvsmom Community Regular
nvsmom
Posted

Ditto the others.  You probably need more time. The first six months or so can be very up and down.  My arthritis, fatigue and hairloss actually peaked after I had been gluten-free for a couple of months and finally started to fade after 6 months gluten-free. I was convinced that I must have lupus or something else, and I even saw a rhuematologist about it.  She told me the same thing that the veterans around here (like Kareng) told me: It's still from the celiac. You need more time.  

 

I still get minor flare-ups of arthritis after 2.5 years gluten-free, but they are much less severe, don't last as long, and are less frequent. Same thing with the fatigue (mostly) and migraines, C, and other old symptoms.  

 

My one symptom that hasn't really improved is my hairloss and my fatigue (to a much smaller degree) but I have hypothyroidism so I'm guessing that it is causing it.  Hypothyroidism is found in over 1 in 10 celiacs so it's always a good idea to get it checked if you have celiac disease.  TSH, free T4 and free T3, and TPO Ab are good tests to start with.

 

Best wishes.

beth01 Enthusiast
beth01
Posted

I'm with Nicole, I have had some of my symptoms actually get worse since going gluten free, and I know I've seen others say it. It really does take time.

charlieroseburns Rookie
charlieroseburns
Posted
  • Author

My thyroid was recently checked and was functioning normally. I made an appointment with a doctor to see if they will check my adrenal glad. My pupils will hardly restrict to a flashlight and re-dilate in under a second, and I read that was a symptom of adrenal fatigue. 
My time outside of work is spent in bed exhausted and in severe pain. Its pretty disheartening that it doesn't sound like this will change any time soon. 

I have been tracking my food and symptoms using Mysyptoms app on my iphone. It's a pretty cool app but has proved useless right now because I feel constantly sick. 

I am so happy to be able to connect with other people who have felt/ are feeling the same way. It was scary when I was diagnosed and had no one else who could relate. 

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hrenee101 Newbie
hrenee101
Posted

I'm right there with you, I was just recently diagnosed and have good days and bad days. Because I am having so many bad days and its affecting my work, I am actually taking some time off from work because I just can't do my job because of it. Everyone keeps telling me that only time will help, well that's hard to hear, when your pain seems to be getting worse or can't keep focused to complete task, or your in too much pain to move. We will get better :) and its really nice to be able to talk to others going through the same situation or others that have went through this in the past. 

1desperateladysaved Proficient
1desperateladysaved
Posted

My functional medicine nurse told me that calcium can make celiac worse.  I don't have more details about that, but perhaps you could look into it.  Also, are you also taking magnesium, which If I got it right is needed to use with calcium?  I would consider other food allergies.  Make sure that your supplements are free of gluten and anything artificial.  I got over 30 years of brain fog and fatigue  I have found the human body extremely complicated and have peeled off many layers of ill health and hope that you will soon feel better too.  .

 

Dee

beth01 Enthusiast
beth01
Posted

I'm right there with you, I was just recently diagnosed and have good days and bad days. Because I am having so many bad days and its affecting my work, I am actually taking some time off from work because I just can't do my job because of it. Everyone keeps telling me that only time will help, well that's hard to hear, when your pain seems to be getting worse or can't keep focused to complete task, or your in too much pain to move. We will get better :) and its really nice to be able to talk to others going through the same situation or others that have went through this in the past.

It is disheartening to hear " it takes time" and have no one be able to give you a time frame. But just think how nice it will be to feel "normal", what ever the h that is lol.

charlieroseburns Rookie
charlieroseburns
Posted
  • Author

My functional medicine nurse told me that calcium can make celiac worse.  I don't have more details about that, but perhaps you could look into it.  Also, are you also taking magnesium, which If I got it right is needed to use with calcium?  I would consider other food allergies.  Make sure that your supplements are free of gluten and anything artificial.  I got over 30 years of brain fog and fatigue  I have found the human body extremely complicated and have peeled off many layers of ill health and hope that you will soon feel better too.  .

 

Dee

I stopped the calcium and B-12 until my check in on Wednesday with the doctor. It is the only thing I added before I hit rock bottom. I wasn't taking any magnesium. (But they don't contain gluten) Debating on doing allergy testing or continuing trial and error. These Dr. appointments sure do add up. $$$

charlieroseburns Rookie
charlieroseburns
Posted
  • Author

I'm right there with you, I was just recently diagnosed and have good days and bad days. Because I am having so many bad days and its affecting my work, I am actually taking some time off from work because I just can't do my job because of it. Everyone keeps telling me that only time will help, well that's hard to hear, when your pain seems to be getting worse or can't keep focused to complete task, or your in too much pain to move. We will get better :) and its really nice to be able to talk to others going through the same situation or others that have went through this in the past. 

I hope you start to feel better! It seems we are the beginning of a long journey! Can't wait for the good days to outweigh the bad. :]

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      My only proof

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      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
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    • knitty kitty
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      By knitty kitty · Posted

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