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

Feeling Tired

june27

Recommended Posts

june27 Apprentice
june27
Posted

I have been feeling really tired lately. I have been gluten/dairy free for 6 months now, but I just don't seem to have much motivation. I am not so sluggish that I can not function, but I am more than happy to spend my days reading on the couch (I used to enjoy this occasionally, but now it seems like I want to do it all of the time). I have also been needing a lot of sleep lately. My doctor ordered a batch of blood tests to check B12, iron/ferritin and thyroid - I am told they they are all within normal range, but that it looks like I might be leaning toward anemia. The doctor is concerned about folate/folic acid (which was not tested).

I was just curious if anyone has had similar experiences, and if being tired is just part of the healing process.

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

Celiac.com Sponsor (A8-M):


Dugudugu Rookie
Dugudugu
Posted

Same story overhere!

I've been 2 months gluten free, and more tired than ever. GP thinks I have 'chronic tired disease' afteral as there has been no progress on me. I feel he cave up on me. . My B12 levels are okay now. In the meantime I am stuck behind my computer watching movies and doing volunteer work, because that costs me the less energy.

nvsmom Community Regular
nvsmom
Posted

I am tired too but it's been recently "discovered" that my thyroid isn't working well through a hight TSH test. I've suspected thyroid problems in myself off and on for years, and I had my TSH tested a few times but they came back a slightly high normal so I let it go since my symptoms aren't extreme. I now know that TSH levela can vary WILDLY in a very short time period so my thyroid could have been starting to "malfunction" but that test didn't show it. Ask for other thyroid tests (T3 and T4) since many celiacs have hashimoto's disease (hypothyroidism).

Also, I had ITP, which is a autoimmune blood disease where your white blood cells attack and kill your (clotting) platelets, so patients can get quite anemic. It could be something else to check.

Best of luck. I hope you find answers soon.

cahill Collaborator
cahill
Posted

Did he check your vitamin D levels ?

LauraB0927 Apprentice
LauraB0927
Posted

I'm three (almost four) months into going gluten free and I was extremely tired, especially around 1:00pm right after I had my lunch. I fell asleep at my desk a few times and was totally embarrassed when a coworker found me. Vitamins levels are fine, thyroid/TSH levels fine, no explainable cause. Still not sure what the issue is but I can definitely understand your frustration. Maybe we're just still healing? Possible CC?

frieze Community Regular
frieze
Posted

I'm three (almost four) months into going gluten free and I was extremely tired, especially around 1:00pm right after I had my lunch. I fell asleep at my desk a few times and was totally embarrassed when a coworker found me. Vitamins levels are fine, thyroid/TSH levels fine, no explainable cause. Still not sure what the issue is but I can definitely understand your frustration. Maybe we're just still healing? Possible CC?

Laura, your specific instance sounds like blood sugar problem. Have you gone to gluten free bread/grain products? They tend to be higher in carbs and lower in protein. Try a no-grain lunch and see if that fixes your problem.

To the others, quantitative B12 testing, for the most part, isn't worth the effort, and the "norms" are too low. Either get MMA testing, or just supplement B12 and see how it goes...because gluten free foods aren't supplemented with folate, that may be an issue to check/watch as well. good luck

june27 Apprentice
june27
Posted
  • Author

@nvsmom - they checked T3 and T4 as well, and both came back "normal"

@a1956chill - no they did not check Vit D. i'll have to ask for that next time...

@frieze - what is MMA testing? my B12 came back as 335 - but they didn't include the desired range. from what i have seen online, this seems on the lower end of the scale, but it's hard to say without knowing if all tests have the same range...

i have been taking a multi-B for 6 days now. today is the first day that i am starting to feel like i have more energy, but i honestly think it is too soon to tell. i am certainly not full of vim and vigor, but i am actually motivated to cook dinner, and clean up the kitchen (the latter has been a big struggle these days).

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

Celiac.com Sponsor (A8-M):


frieze Community Regular
frieze
Posted

@nvsmom - they checked T3 and T4 as well, and both came back "normal"

@a1956chill - no they did not check Vit D. i'll have to ask for that next time...

@frieze - what is MMA testing? my B12 came back as 335 - but they didn't include the desired range. from what i have seen online, this seems on the lower end of the scale, but it's hard to say without knowing if all tests have the same range...

i have been taking a multi-B for 6 days now. today is the first day that i am starting to feel like i have more energy, but i honestly think it is too soon to tell. i am certainly not full of vim and vigor, but i am motivated to cook dinner, and clean up the kitchen (the latter has been a big struggle these days).

MMA is methylmalonic acid, if it is elevated, your B12 is deficient. 335 would read "normal" in the US, not in many other countries, ie Japan is over 500. Also, the older we are, the less accurate it becomes. It measures B12 analog (inactive substances) as well as active B12.

since you are potentially symptomatic, your level is too low. supplement with methylcobolamin, not cyanocobolamin. You may have to get that on line.do it on an empty stomach, even if you do the sublingual. good luck

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. Rogol72
      - Rogol72 replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough...
    2. ShariW
      - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

      In addition to gastrointestinal symptoms like diarrhea, I had gastroesophageal reflux that was becoming intolerable despite treatment with PPIs and antacids. When I went gluten-free, the GERD lessened tremendously (as did the other symptoms).
    3. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

      Thank you so very much Scott. Just having someone understand my situation is so very helpful. If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    4. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to ...
    5. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748
    ebrown
    Newest Member
    ebrown
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.