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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,546
    • Most Online (within 30 mins)
      7,748
    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.