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

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

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

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

Did he check your vitamin D levels ?

LauraB0927 Apprentice

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

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

@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

@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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,735
    • Most Online (within 30 mins)
      7,748

    Patricia KUBELKA
    Newest Member
    Patricia KUBELKA
    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

    • Theresa2407
      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
×
×
  • 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.