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

So Tired!

swittenauer

Recommended Posts

swittenauer Enthusiast
swittenauer
Posted

My husband was diagnosed last July & still is so so tired most all of the times it seems. Some times are worse than others but overall he is just plain tired. He got back his most recent bloodwork & everything came up roses. My question is, will he ever get over being this way? Is it just part of it? I just want to help him in some way but am unsure what, if anything, I can do if it is just part of it.

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

Celiac.com Sponsor (A8-M):


CarlaB Enthusiast
CarlaB
Posted

Have they checked his thyroid?

swittenauer Enthusiast
swittenauer
Posted
  • Author

Yes they have.

jerseyangel Proficient
jerseyangel
Posted
My husband was diagnosed last July & still is so so tired most all of the times it seems. Some times are worse than others but overall he is just plain tired. He got back his most recent bloodwork & everything came up roses. My question is, will he ever get over being this way? Is it just part of it? I just want to help him in some way but am unsure what, if anything, I can do if it is just part of it.

Hi--I was diagnosed last June. I still have quite a bit of fatigue. And, like your husband, some times are worse than other times. I had bloodwork done in Nov.--after 6 months, and everything including my thyroid was fine. My hemiglobin, that had been at 8 before I went gluten-free was 14.5! So in my case, it is not the anemia or my thyroid. I am trying to get some exercise (gentle, like Pilates and walking) and other than that, am hanging in there, hoping it will improve.

swittenauer Enthusiast
swittenauer
Posted
  • Author

As bad as it is to hear that someone else experiences the same thing, it is comforting to know that we aren't alone.

Nancym Enthusiast
Nancym
Posted

Fatigue can be a big player in any autoimmune disease. So there might be something lurking there that hasn't been found.

I found that after getting off both dairy and gluten my fatigue got a lot better. But I also discovered I have an autoimmune disease, and I'm getting that treated, so it might be that as well.

rmmadden Contributor
rmmadden
Posted

Your husband is about the same age as I am. I drank High-Protein Boost for a few months to help w/ the fatigue. Any flavor except chocolate malt is gluten-free. Don't worry, the fatigue will pass eventually. Now I'm back to playing softball, golf, walking and bicycling.

Best of luck,

Cleveland Bob B)

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

Have his ferretin, vitamin D, Calcium + Magnesium levels been checked? A deficiency in any of those could cause fatigue.

Guhlia Rising Star
Guhlia
Posted

It took me months to regain any kind of energy level after going gluten free. It took me two years (and still working) to get ALL the gluten out of my diet so that I could feel better. I still suffer from fatigue a little, but it's nothing near what it used to be.

Just out of curiosity... Does he show any signs of sleep apnea? I know that can cause major fatigue.

Good luck!

Alexandra Newbie
Alexandra
Posted
Yes they have.

I'm sorry your husband's not feeling well.

Besides the standard TSH test (the typical thyroid screen), have they tested him for anti-thyroid antibodies? These are not uncommon in celiacs and sometimes people who have them (including me) have normal TSH but still respond well to treatment for hypothyroidism to lower the TSH to the lower end of the normal range.

Also, do check that his TSH is under 3.0. Many doctors aren't aware that the top end of the reference range was lowered in 2003. It used to be thought that anything up to 5.0 was OK.

-- Alexandra

ianm Apprentice
ianm
Posted

It took me about two years to really get over the fatigue. There was a time when it took everything I had to just get from the bedroom to the bathroom. You need to give it some more time.

judy05 Apprentice
judy05
Posted
My husband was diagnosed last July & still is so so tired most all of the times it seems. Some times are worse than others but overall he is just plain tired. He got back his most recent bloodwork & everything came up roses. My question is, will he ever get over being this way? Is it just part of it? I just want to help him in some way but am unsure what, if anything, I can do if it is just part of it.

I found that doing exercises helped me. I started out doing 4-5 minutes on the treadmill or bicycle. This has helped me get my blood sugar under control, I lost a few pounds and began to feel stronger. I gradually worked up to 30-45 minutes. Don't let him overdo in the beginning. There is a light at the end of the tunnel.

  • 1 month later...
revceliac Newbie
revceliac
Posted

This has been very helpful. I was diagnosed with celiacs at the end of April of 2006. I immediately felt better being off the gluten but now that my gastro system has settled down, it seems like my energy has too. Work is a struggle. I take naps a lot. There are days I get out of bed and begin counting time until I can go to bed. I like the idea of small amounts of exercising.

MSU Newbie
MSU
Posted

Pernicious Anemia (low B12 levels) is common in Celiacs, and mild cases can manifest as fatigue. Moreover, it doesn't go away quickly, so you might want to get that checked. I've been gluten free for two years and still have some issues with it.

Good Luck!

cgilsing Enthusiast
cgilsing
Posted

It took me a long time to get over the fatigue. I don't really remember exactly how long as it just gradually went away but I know it was many months after I went gluten-free. I even saw a specialist to try and work out the problem (they didn't have any advice)...but I've been gluten-free for two years and I think I'm over it....so hang in there!

  • 2 weeks later...
swittenauer Enthusiast
swittenauer
Posted
  • Author

He has been exhausted since it all started. You would think that it would subside but no real luck so far. He has been checked from head to toe & they can't find any cause besides celiac in general. Time will tell.

loraleena Contributor
loraleena
Posted

Yes, make sure he has his thyroid peroxidase antibodies checked. TSH is farely innacurate in a lot of people.

This test would signal Hashimotos hypothyroid. I would also get his adrenal function and DHEA levels checked.

spetti Newbie
spetti
Posted

Wow...I have been exhausted lately and never even thought it might be a side effect of my Celiac Disease. Thank you....I was afraid somthing new was coming at me. :)

I have been Gluten Free for a year now and had no symptoms for the last 6 months, but still experience some fatigue.

Lymetoo Contributor
Lymetoo
Posted

He may respond to Armour Thyroid even if his TSH is within "normal" levels. I don't know that much about it, but I have responded to the Armour and my tests were all "normal".

Another possibility is Lyme disease. Any chance of that??

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. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      My journey is it gluten or fiber?

      Thanks bumped it up and now take all 3 vitamins 2 capsules each with the super b complex at breakfast. I will give it some time to see if I notice a difference. I am going to track my eating daily diary on a myfitness pal app to see if the "claimed" gluten free foods bother me or not.
    2. JoJo0611
      - JoJo0611 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Yeast extract

      Please can anyone help. I was diagnosed on 23rd December and I am trying my best to get my head around all the things to look out for. I have read that yeast extract is not to be eaten by coeliacs. Why? And is this all yeast extract. Or is this information wrong. Thanks.
    3. trents
      - trents replied to Seabeemee's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Labs ? Awaiting in person follow up with my GI

      Welcome to the celiac.com community, @Seabeemee! The fact that the genetic testing shows you do not have either of the two genes associated with the potential to develop celiac disease (HlA DQ2 and HLA DQ8) pretty much ensures that you do not have celiac disease and the biopsy of the small bowel showing "normal villous architecture" confirms this. But...
    4. Seabeemee
      - Seabeemee posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Labs ? Awaiting in person follow up with my GI

      My Doctor messaged me that I have no sign of Celiac disease so until I meet with her next week I don’t know what the labs mean. I am being evaluated by my new GI for Celiac disease because of digestive issues (bloating, distention, fullness in mid section, diarrhea). I also have been diagnosed with GERD and some associated issues hence the endoscopy. ...
    5. Scott Adams
      - Scott Adams commented on Scott Adams's article in Diagnosis, Testing & Treatment
      7

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

      The link at the bottom of the article is the source: https://www.science.org/doi/10.1126/scitranslmed.adr8941
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,166
    • Most Online (within 30 mins)
      7,748
    AmynDevyn
    Newest Member
    AmynDevyn
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      Thanks bumped it up and now take all 3 vitamins 2 capsules each with the super b complex at breakfast. I will give it some time to see if I notice a difference. I am going to track my eating daily diary on a myfitness pal app to see if the "claimed" gluten free foods bother me or not.
    • JoJo0611
      Yeast extract

      By JoJo0611 · Posted

      Please can anyone help. I was diagnosed on 23rd December and I am trying my best to get my head around all the things to look out for. I have read that yeast extract is not to be eaten by coeliacs. Why? And is this all yeast extract. Or is this information wrong. Thanks. 
    • trents
      Labs ? Awaiting in person follow up with my GI

      By trents · Posted

      Welcome to the celiac.com community, @Seabeemee! The fact that the genetic testing shows you do not have either of the two genes associated with the potential to develop celiac disease (HlA DQ2 and HLA DQ8) pretty much ensures that you do not have celiac disease and the biopsy of the small bowel showing "normal villous architecture" confirms this. But you could have NCGS (Non Celiac Gluten Sensitivity) which would not damage the villous architecture. You could also have SIBO (Small Intestine Bacterial Overgrowth) or H. Pylori infection. Both of these conditions would thrive on carbs and you do say you feel better when you don't eat a lot of carbs. And with your resection of the small bowel, that could be causing it's own problems like you describe. When was that surgery done? You have had over 1 foot of your small bowel removed by that surgery in 2022 so that would certainly challenge digestion and nutrient absorption.  Edited
    • Seabeemee
      Labs ? Awaiting in person follow up with my GI

      By Seabeemee · Posted

      My Doctor messaged me that I have no sign of Celiac disease so until I meet with her next week I don’t know what the labs mean. I am being evaluated by my new GI for Celiac disease because of digestive issues (bloating, distention, fullness in mid section, diarrhea).  I also have been diagnosed with GERD and some associated issues hence the endoscopy. I also was diagnosed with NAFLD after an abdominal CT scan in December - which surprises me because I gave up alcohol 5 years ago, workout 5 days a week, cardio / weights and cook from scratch every night. Anecdotally,  I do feel better when I do not eat a lot of carbs and have been staying away from gluten 95% of the time until my follow up.  History: I had an emergency bowel obstruction operation in August 2021 for a double closed loop obstruction, open surgery removed 40 cm of my small intestine, my appendix, cecal valve and illeocectomy. Beside the fact that this put me in the situation of no longer being able to absorb Vitamin B12  from my diet and having to  inject Vit B 12 2x a month, I also became Iron deficient and am on EOD iron to keep my levels high enough to support my Vitamin B12 injections, as well as daily folic acid. I tested positive for pernicious anemia in 2022 but most recently that same test came back negative. Negative Intrinsic Factor. My results from the biopsies showed 2nd part of Duodenum, small bowel Mildly patch increased intraepithelial lymphocytes with intact villious architecture. Comment: Duodenal biopsies with normal villous architecture and increased intrepithelial lymphocytes (Marsh I lesion) are found in 1-3% of patients undergoing duodenal biopsy, and an association with celiac disease is well established however the specificity remains low. Similar histologic findings may be seen in H pylori gastritis, NSAID and other medication use including olmesartan, bacterial overgrowth, tropical sprue and certain autoimmune disorders. So my GI ordered Labs for Celiac confirmation: Sorry I couldn’t upload a photo or pdf so typed below: TEST NAME                               IN RANGE and/or RESULTS RESULTS:  IMMUNOGLOBULIN A :           110 GLIADIN (DEAMIDATED) AB (IGG, IGA)                            <1.0 GLIADIN (DEAMIDATED) AB (IGA)                                     <1.0 GLIADIN (DEAMIDATED) AB (IGG)                                    <1.0 TISSUE TRANSGLUTAMINASE ANTIBODY, IGG, IGA TISSUE TRANSGLUTAMINASE AB, IGG                                     <1.0 TISSUE TRANSGLUTAMINASE AB, IGA                                     <1.0 INTERPRETATION: <15.0 ANTIBODY NOT DETECTED  > OR = 15.0 ANTIBODY DETECTED RESULTS: HLA TYPING FOR CELIAC DISEASE INTERPRETATION (note The patient does not have the HLA-DQ associated with celiac disease variants) More than 97% of celiac patients carry either HLA-DQ2 (DQA1*05/DQB1*02) or HLA-DQ8 (DQA1*03/DQB1*0302) or both. Genetic counseling as needed. HLA DQ2 : NEGATIVE HLA D08: NEGATIVE HLA VARIANTS DETECTED: HLA DA1* : 01 HLA DA1* : 05 HLA DQB1*: 0301 HLA DQB1*: 0501 RESULTS REVIEWED BY: Benjamin A Hilton, Ph.D., FACMG I appreciate any input, thank you.         
    • trents
      EMA Result

      By trents · Posted

      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
×
×
  • 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.