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. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      IBS-D vs Celiac

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a...
    2. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    3. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    4. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    5. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748
    Jeffrey Yeres
    Newest Member
    Jeffrey Yeres
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
×
×
  • 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.