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

I'm Still So Tired - What Is Going On?


aprilh

Recommended Posts

aprilh Apprentice

I have been gluten free since around first of July. I am doing much better but I am still tired all the time. Some times are worse than others. I went off dairy for a short time, but am back on it - very little bits. Today, for lunch I ate leftover gluten free pasta with gluten free sauce and ground beef. I have been soooooo tired since. I could go to sleep but I can't until my kids do.

My legs constantly feel so weak and tired. I have lost LOTS of weight in a short period. Everytime I weigh, I have lost more weight. I thought maybe its corn? Some gluten free pastas are made with corn.


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



Celiac.com Sponsor (A8-M):



queenofhearts Explorer

I find I do best with a lighter lunch, anything heavy makes me sleepy in the afternoon. I always have an afternoon snack so I don't fade out before dinner. Maybe you should try the "grazing" approach, & eat several smaller meals.

marciab Enthusiast

I found out that I have to limit my processed grains. I do better on whole quinoa, buckwheat or millet.

key Contributor

It could be you are still healing and recovering. You were sick for along time. Are you sure you aren't getting gluten anywhere still? Do you still eat out?

I know I have those symptoms when gluttened.

Monica

RiceGuy Collaborator

I've also been extremely tired, but I'm now finding out there have been some things in my food choices which have been causing much of the reactions I've had. My leg weakness eventually worsened to the point where I could not walk at all, and there was a whole LOT of pain, twitching, spasms, etc. A great deal of digestive/intestinal issues as well.

But now, I think I may have narrowed down what it is (still trying to recover). It seems that nightshade foods like potatoes and tomatoes have become intolerable to my system! Triggered by what I'm not sure. Perhaps nothing triggered it, but at any rate it doesn't take too much of it to effect me. On the other hand it apparently takes several weeks to recover from the effects.

This may or may not help you at all, but I figure it might be worth considering.

Hope you feel better than I do!

jenvan Collaborator
I have been gluten free since around first of July. I am doing much better but I am still tired all the time. Some times are worse than others. I went off dairy for a short time, but am back on it - very little bits. Today, for lunch I ate leftover gluten free pasta with gluten free sauce and ground beef. I have been soooooo tired since. I could go to sleep but I can't until my kids do.

My legs constantly feel so weak and tired. I have lost LOTS of weight in a short period. Everytime I weigh, I have lost more weight. I thought maybe its corn? Some gluten free pastas are made with corn.

Being gluten-free since July is not long at all...for many folks it isn't long enough on the diet to notice any improvement. ie. myself :) You may want to keep a food/symptom journal to see if other foods are causing you issues, like the dairy. For some folks, pasta would bring on post-meal tiredness. If this is the case for you, you could always err on the side of protein. Vitamin deficiencies, ie. b12, iron etc., fairly common in Celiacs, can also cause an extra dose of fatigue. You may want to look into these if you haven't already. Either way, chances are also that you just need more time. Every person is different, like their history... I didn't notice real improvement in my energy till after a year gluten-free. And honestly, I still struggle. Good news is many folks noticed it within a few months. ...But not knowing what your system is like, I suggest stick with it and try and cope as best you can while you continue in this beginning stage of healing. It will get better!

kbtoyssni Contributor

It sounds like you're just going through the normal healing process. I did really well the first month on the gluten-free diet, then I got a slight cold and was out of commission for the next month. Give it time.


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



Celiac.com Sponsor (A8-M):



Nancym Enthusiast

Have you had your thyroid checked out? That's a possibility. Another though is some autoimmune disease, they all seem to include a lovely dose of fatigue.

Also, carbs are processed by the body rather quickly raising the blood sugar, insulin gets release which brings it back down. That drop in blood sugar makes some of us really sleepy. You can either eat another carby meal and start the cycle over again, or you can try to eat something that doesn't spike the blood sugar so much. I personally limit the amount of starchy or sugary stuff I eat and it really helps with my alertness. I focus more on proteins and natural sources of carbs that are digested more slowly, like fruits and veggies. If you're going to have starchy stuff, I wouldn't eat it until dinner time. Then you might find the sleepiness coinsides with when you want to go to sleep.

Final thought, all the stuff I'm intolerant of, dairy, soy and wheat make me feel tired and make my brain malfunction. So perhaps you're still eating something you shouldn't be.

Guhlia Rising Star

Soy is in most store-bought spaghetti sauces... Just a thought. It could be that you've developed an intolerance to soy. Many of us develop other intolerances after Celiac surfaces.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,029
    • Most Online (within 30 mins)
      7,748

    Jen72
    Newest Member
    Jen72
    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

    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.