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

No Energy. What Am I Missing?

charlieroseburns

Recommended Posts

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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. 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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. :]

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. trents
      - trents replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

      Wheatwacked, are you speaking of the use of potassium bromide and and azodicarbonamide as dough modifiers being controlling factor for what? Do you refer to celiac reactions to gluten or thyroid disease, kidney disease, GI cancers?
    2. Scott Adams
      - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

      Excess iodine supplements can cause significant health issues, primarily disrupting thyroid function. My daughter has issues with even small amounts of dietary iodine. While iodine is essential for thyroid hormone production, consistently consuming amounts far above the tolerable upper limit (1,100 mcg/day for adults) from high-dose supplements can trigger...
    3. Wheatwacked
      - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

      In Europe they have banned several dough modifiers potassium bromide and and azodicarbonamide. Both linked to cancers. Studies have linked potassium bromide to kidney, thyroid, and gastrointestinal cancers. A ban on it in goes into effect in California in 2027. I suspect this, more than a specific strain of wheat to be controlling factor. Sourdough...
    4. jenniber
      - jenniber replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      5

      Celiac support is hard to find

      same! how amazing you have a friend who has celiac disease. i find myself wishing i had someone to talk about it with other than my partner (who has been so supportive regardless)
    5. RMJ
      - RMJ replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      need help understanding testing result for Naked Nutrition Creatine please

      They don’t give a sample size (serving size is different from sample size) so it is hard to tell just what the result means. However, the way the result is presented does look like it is below the limit of what their test can measure, so that is good.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,118
    • Most Online (within 30 mins)
      7,748
    Shiwaji
    Newest Member
    Shiwaji
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Blood Test for Celiac wheat type matters?

      By trents · Posted

      Wheatwacked, are you speaking of the use of potassium bromide and and azodicarbonamide as dough modifiers being controlling factor for what? Do you refer to celiac reactions to gluten or thyroid disease, kidney disease, GI cancers? 
    • Scott Adams
      Blood Test for Celiac wheat type matters?

      By Scott Adams · Posted

      Excess iodine supplements can cause significant health issues, primarily disrupting thyroid function. My daughter has issues with even small amounts of dietary iodine. While iodine is essential for thyroid hormone production, consistently consuming amounts far above the tolerable upper limit (1,100 mcg/day for adults) from high-dose supplements can trigger both hyperthyroidism or hypothyroidism, worsen autoimmune thyroid diseases like Hashimoto's, and lead to goiter. Other side effects include gastrointestinal distress. The risk is highest for individuals with pre-existing thyroid conditions, and while dietary iodine rarely reaches toxic levels, unsupervised high-dose supplementation is dangerous and should only be undertaken with medical guidance to avoid serious complications. It's best to check with your doctor before supplementing iodine.
    • Wheatwacked
      Blood Test for Celiac wheat type matters?

      By Wheatwacked · Posted

      In Europe they have banned several dough modifiers potassium bromide and and azodicarbonamide.  Both linked to cancers.  Studies have linked potassium bromide to kidney, thyroid, and gastrointestinal cancers.  A ban on it in goes into effect in California in 2027. I suspect this, more than a specific strain of wheat to be controlling factor.  Sourdough natural fermentation conditions the dough without chemicals. Iodine was used in the US as a dough modifier until the 1970s. Since then iodine intake in the US dropped 50%.  Iodine is essential for thyroid hormones.  Thyroid hormone use for hypothyroidism has doubled in the United States from 1997 to 2016.   Clinical Thyroidology® for the Public In the UK, incidently, prescriptions for the thyroid hormone levothyroxine have increased by more than 12 million in a decade.  The Royal Pharmaceutical Society's official journal Standard thyroid tests will not show insufficient iodine intake.  Iodine 24 Hour Urine Test measures iodine excretion over a full day to evaluate iodine status and thyroid health. 75 year old male.  I tried adding seaweed into my diet and did get improvement in healing, muscle tone, skin; but in was not enough and I could not sustain it in my diet at the level intake I needed.  So I supplement 600 mcg Liquid Iodine (RDA 150 to 1000 mcg) per day.  It has turbocharged my recovery from 63 years of undiagnosed celiac disease.  Improvement in healing a non-healing sebaceous cyst. brain fog, vision, hair, skin, nails. Some with dermatitis herpetiformis celiac disease experience exacerbation of the rash with iodine. The Wolff-Chaikoff Effect Crying Wolf?
    • jenniber
      Celiac support is hard to find

      By jenniber · Posted

      same! how amazing you have a friend who has celiac disease. i find myself wishing i had someone to talk about it with other than my partner (who has been so supportive regardless)
    • RMJ
      need help understanding testing result for Naked Nutrition Creatine please

      By RMJ · Posted

      They don’t give a sample size (serving size is different from sample size) so it is hard to tell just what the result means.  However, the way the result is presented  does look like it is below the limit of what their test can measure, so that is good.
×
×
  • 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.