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

Always Tired


Boss'Wife

Recommended Posts

Boss'Wife Rookie

Hi all,

My names Tena I am still fairly new, was diagnosed about 2 1/2 months ago with Celiac. Going back to Dr in a week for some more testing. I was just wondering for those of you that have been gluten-free for quite awhile does the feeling of exhaustion ever go away ? I can sleep 20 hours a day but I am always tired never ever have any energy to do anything. I always have headaches, my neck and back always hurt, stomach pain, dry itchy skin my legs swell for no reason that I am aware of. My heels are sensitive, my eyes are sensitive now.. Sorry I am just having a rough week, I know everyone does I just don't have anyone to talk to...........


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



Celiac.com Sponsor (A8-M):



AVR1962 Collaborator

Hi all,

My names Tena I am still fairly new, was diagnosed about 2 1/2 months ago with Celiac. Going back to Dr in a week for some more testing. I was just wondering for those of you that have been gluten-free for quite awhile does the feeling of exhaustion ever go away ? I can sleep 20 hours a day but I am always tired never ever have any energy to do anything. I always have headaches, my neck and back always hurt, stomach pain, dry itchy skin my legs swell for no reason that I am aware of. My heels are sensitive, my eyes are sensitive now.. Sorry I am just having a rough week, I know everyone does I just don't have anyone to talk to...........

Yes, you can regain your energy and the symptoms mentioned will go away if you keep a real strict gluten-free diet and get all the nutrients your body needs. You could easily be deficient in some vitamins and minerals which are causing part of your issues. Celiacs typically have problems enough B12, iron, calcium, magnesium and vit D. I basically had to relearn how to eat, trying to load my diet with nutrients. Big help for me was getting outside and soaking up some sunshine.

Kansas Rookie

Yes, you can look forward to feeling great again...but it does take time. I had the energy of three people before I got sick, so having no energy just about did me in. I am a "dope", as I thought it was taking three years to get rid of all my symptoms, turns out that dairy was a contributing factor as well. Now that I have stopped dairy, plus the gluten of course, I have the energy of three people again...I feel great. Getting rid of the gluten resolved the majority of my symptoms. The dairy caused a lot of the same symptoms for me, including some of the fatigue.

Bubba's Mom Enthusiast

You may just need to heal more. Have you had your vitamin/mineral levels checked? Suppliments work wonders.

When I went gluten-free I kept getting extreme fatigue every once in a while. I was keeping a food log and was able to see that soy was causing the tired feeling. It was like being drugged the day after I consumed it.

Are you keeping a food log? It's possible you could have another food sensitivity entering the mix. It might help you pin point some other issue. It gets tricky, because reactions to a food can show up a day or even two after consumption.

There's a posibilty that you could be getting cc by something too?

I hope you can get this sorted out so you feel better.

Boss'Wife Rookie

You may just need to heal more. Have you had your vitamin/mineral levels checked? Suppliments work wonders.

When I went gluten-free I kept getting extreme fatigue every once in a while. I was keeping a food log and was able to see that soy was causing the tired feeling. It was like being drugged the day after I consumed it.

Are you keeping a food log? It's possible you could have another food sensitivity entering the mix. It might help you pin point some other issue. It gets tricky, because reactions to a food can show up a day or even two after consumption.

There's a posibilty that you could be getting cc by something too?

I hope you can get this sorted out so you feel better.

Thank you for your input, I have a Dr appt in two weeks and will get my vitamin/mineral levels checked then. I have been writing down questions to ask her that I can never remember when I am there because I have No memory what so ever. I have not kept a food log but I am going to start one to see if I can narrow things down. Also can anyone tell me a good gluten-free lotion ? My skin is so dry it makes me crazy, I have been doing alot of looking on the internet but would rather get the opinion of someone who is going thru same thing. Thank you to all and have a blessed day/night.. : )

Archived

This topic is now archived and is closed to further replies.

  • 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 replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    2. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    3. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    4. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

    5. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,154
    • Most Online (within 30 mins)
      7,748

    bobadigilatis
    Newest Member
    bobadigilatis
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
×
×
  • 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.