Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Celiac & post-thyroidectomy - fatigued ALL the time :)

sdlane

Recommended Posts

sdlane Rookie
sdlane
Posted

I have been gluten-free for 13 months since my Celiac diagnosis via blood test & endoscopy...like freakishly good about things.  I'm a changed my makeup & hair products, google-the-crap-out-ofeverything-before-I-eat-it kind of compliant gal. Anyhow, I had Graves Disease and had my 7" long dead thyroid removed in 2010.  I also have gastritis that was found during my endoscopy.  My problem is that I feel like @#$* All.  The.  Time.  From massively debilitating fatigue to an acutely high CRP.  I just got my labs back and my B12 is near the bottom, as well as my D3, which isn't surprising as it has been raining for the past 9 months.  lol  I try to eat low processed foods, but have still put on 25 lbs in the last year!  My triglycerides have dropped to like 70 and my overall cholesterol is 141....that seems to mean I'm eating properly.  My TSH is low (.01) but that's normal when you don't have a thyroid.  I'm on 200mg/day of Tirosint and 25 of Cytomel.  My A1c and glucose are low, so no issues with being diabetic.  I am a moderate exerciser, mostly walking and scuba diving..I did buy a punching bag but haven't used it yet. :)  I suppose I could become a gym rat, but that isn't realistic for me.  I have a very stressful job, that I love, and I travel a lot.  42 1/2, no kids and a great boyfriend, who is literally the most understanding guy ever!  Unfortunately, the sex drive has become pretty much non-existant too.  

I hate to sound like a sob story, but the OCD control freak in me can't seem to "fix" me.  Has anyone else had any luck overcoming all this?  I am an insomniac as well, getting perhaps 4-5 hours per night, even when I have 10 hours to sleep.  I use a mask, ear plugs, lavender oil on the soles of my feet, hot tub before bed, writing down my to-do list so I don't worry about it all night, Headspace meditation app (that cute-sounding British guy can actually put me to sleep!), drink chamomile, etc.  Anyhow, there you go.  I'd love to hear what may have worked for you.  I'm tired of going to bed wide awake and waking up so tired I can't function all day.   Love to you all!  xoxo

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

Celiac.com Sponsor (A8-M):


Ennis-TX Grand Master
Ennis-TX
Posted

Yeah I do swear by supplementing, I would suggest looking at various B vitamins, magnesium, iron, vitamin D, E, and perhaps some others.  I use a liquid form by Liquid Health called Stress & Energy and the Neurological Support from them for b-vitamins, half a serving each 3 times a day. And a rotational use of Natures Vitality Calm and Doctors Best Magnesium Powder for my Magnesium. I will link a life of everything I use for supplements.   Hopefully it can give you some idea of where to go, we are all different about how stuff effects us.    To help sleep I take a few tsp of pumpkin seed protein powder with a tiny bit of almond milk before bed, really seems to help me sleep.

https://www.celiac.com/forums/topic/116482-supplement-and-foods-you-take/

 

Gemini Experienced
Gemini
Posted
2 hours ago, sdlane said:

I have been gluten-free for 13 months since my Celiac diagnosis via blood test & endoscopy...like freakishly good about things.  I'm a changed my makeup & hair products, google-the-crap-out-ofeverything-before-I-eat-it kind of compliant gal. Anyhow, I had Graves Disease and had my 7" long dead thyroid removed in 2010.  I also have gastritis that was found during my endoscopy.  My problem is that I feel like @#$* All.  The.  Time.  From massively debilitating fatigue to an acutely high CRP.  I just got my labs back and my B12 is near the bottom, as well as my D3, which isn't surprising as it has been raining for the past 9 months.  lol  I try to eat low processed foods, but have still put on 25 lbs in the last year!  My triglycerides have dropped to like 70 and my overall cholesterol is 141....that seems to mean I'm eating properly.  My TSH is low (.01) but that's normal when you don't have a thyroid.  I'm on 200mg/day of Tirosint and 25 of Cytomel.  My A1c and glucose are low, so no issues with being diabetic.  I am a moderate exerciser, mostly walking and scuba diving..I did buy a punching bag but haven't used it yet. :)  I suppose I could become a gym rat, but that isn't realistic for me.  I have a very stressful job, that I love, and I travel a lot.  42 1/2, no kids and a great boyfriend, who is literally the most understanding guy ever!  Unfortunately, the sex drive has become pretty much non-existant too.  

I hate to sound like a sob story, but the OCD control freak in me can't seem to "fix" me.  Has anyone else had any luck overcoming all this?  I am an insomniac as well, getting perhaps 4-5 hours per night, even when I have 10 hours to sleep.  I use a mask, ear plugs, lavender oil on the soles of my feet, hot tub before bed, writing down my to-do list so I don't worry about it all night, Headspace meditation app (that cute-sounding British guy can actually put me to sleep!), drink chamomile, etc.  Anyhow, there you go.  I'd love to hear what may have worked for you.  I'm tired of going to bed wide awake and waking up so tired I can't function all day.   Love to you all!  xoxo

Hello sdlane!  

As another with thyroid disease (Hashi's) and Celiac, I wanted to mention that you have only been gluten-free for 13 months so you may not be absorbing well yet.  Your cholesterol is still a bit low, like mine was for a long time after diagnosis, and your vitamin levels are in the toilet, which would indicate you are still not healed well yet.  Don't worry......it took me a long time for the symptoms to go away (3 years in total) and 10 years before my cholesterol started to go up noticeably.  I always had trouble digesting and absorbing fats and it took me forever to normalize that but I was diagnosed at age 46.

What that all means is that you may not be absorbing the thyroid meds well yet so that might explain the fatigue.  I know thyroid fatigue well and it is such a b%$@#.  :blink:  Four years into the gluten-free diet, I went seriously hyper and didn't sleep for almost a week.  All of a sudden, the dose I had taken for years was way too much because my absorptive powers were so much better.  It took a while to re-figure a correct dose and I was messed up from all of it.

Have they done a full thyroid panel or just the TSH?  You need to see what the hormone levels are. You can have suppressed TSH and not have normal hormone levels.  You have gained weight too so I don't think what you are taking is the amount your body is actually utilizing.  Do you swallow your thyroid meds whole or can they be chewed and broken up in your mouth?  I chew my Nature-throid so it dissolves in my mouth and then I swallow with water. It helps to absorb it better.

To give you a better picture of how you can tell if you're absorbing better, my cholesterol started out at 125 pre-diagnosis and never got above 160 for 8-9 years after diagnosis.  Then bammo!  At year 10, it went to 200.  How many people are happy when their cholesterol reaches 200?  I was, because my good cholesterol was responsible for most of the increase....it went up 25 points in 2 years!  My HDL was only in the 20's before my diagnosis and now it is 82 so yes, it can take quite awhile for fats and harder things to be absorbed well. 

I also still have some trouble with getting a lot of sleep. I go to sleep without problems because I exercise but am a life long night owl and don't get to bed until midnight, most nights.  I am not tired enough to sleep until then.  I work so have to get up by 6:30 but am slow in the mornings. It takes about an hour before I am really awake and feeling energized.  This has been for my whole life so I am beginning to think it's in my genetics. It's not always easy to balance the thyroid, is it?

Lastly, don't worry too much about your CRP right now. Having these 2 AI diseases and needing more healing time for Celiac will keep that number higher for awhile. It will take longer than you like but it is what it is. Keep checking it but only once a year because, otherwise, you'll drive yourself crazy with worry.  The numbers will improve, over time.  Is it possible you are driving yourself too hard?  You have the same lifestyle I do.....no kids, work full time but you said you travel a lot.  I travel but not a lot....just for vacations, not work. That is a busy schedule for a newer Celiac with no thyroid that is being 100% supplemented with replacement hormone. I got tired reading your post!   :P  Have you taken any real time off lately to recharge your batteries?

sdlane Rookie
sdlane
Posted
  • Author

I appreciate the input...thank you!  Never head of the pumpkins seed powder...gives me something to google while waiting for my doctor to grace me with his presence.  He's always about 2 hours late for my annual appointments.  lol  Have you seen CeliAct before?  They stink and are hard to swallow, but I thought it might be worth a try.  It seems to have almost everything you mentioned above.  Open Original Shared Link

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,960
    • Most Online (within 30 mins)
      7,748
    PMcCauley
    Newest Member
    PMcCauley
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cameo674
      Help vetting HLA-DQ typing provider

      By cameo674 · Posted

      So those rs numbers tell researchers where the dbSNP is located in a Genome so that other reasearchers or an AI system can look in that specific spot for that Snip of information.  You can look those rs # s by pasting the numbers after rs into the lookup on this page https://www.ncbi.nlm.nih.gov/snp/ right under the Blue header bar at the top of the webpage.  Since you are not a researcher, I do not know how this will help you though.
    • cameo674
      Finally got in to doctor to get my referral and I lucked out and got into Gastro the same day - question about different transglutaminase results

      By cameo674 · Posted

      So I posted here once before, and everyone advocated that I get into a GI doc.  I finally got into my functional health appointment on 6/16 to get my blood results evaluated and get the Gastro referral. I was told that I would be fortunate to see a gastro doctor by December, because of the number of people waiting to get in, but they did believe that I needed to see a GI doc among others.  Well, the stars aligned. I got home. I looked at MyChart and it showed an appointment available for later that same day. I never clicked so fast on an appointment time. The gastro doc ran some additional blood work based off the December values that had confirmed my daughter's suspicion that I have undiagnosed stomach issues.  Gastro has also scheduled me to get an upper endoscopy as well as a colonoscopy since it has been 8 years since my last one. She said it would rule out other concerns if I did not show Celiac per the biopsies.  Those biopsies will not occur until August 29th and like everyone here stated, Gastro wants me to keep gluten in my diet exactly as everyone suggested. To be honest, I was barely eating any gluten since I figured I would have plenty of time to do so before testing.  Doc is also looking for the cause of the low level heartburn that I have had for 30 years.  I have mentioned the heartburn to PCPs in the past and they always said take a tums or other OTC drug.  The upper endoscopy is for ruling out eosinphilic esophagitis, h. pylori, and to biopsy the duodenal bulb and second portion to confirm or exclude celiac. The colonoscopy will have random biopsies to rule out microscopic colitis. I didn't really catch her reasoning for the bloodwork.  Doc looked at the December numbers and said they were definitely concerning for Celiac.  She also said, “Hmm that’s odd; usually it’s the reverse”, but I did not catch which result made her say that. She seems very through.  She also asked why I had never bothered to see a GI before.  To be honest, I told her I just assumed that the heartburn and loose stool were a part of aging.  I have been gassy since I was born and thought constantly passing gas was normal?  Everyone I know with Celiac have horrible symptoms that cannot be attributed to other things.  They are in a lot of stomach pain.  I do not go through that.  I attribute my issues to the lactose intolerance that comes with aging, but have slowly been eliminating foods from my diet due to the heartburn or due my assumption that they did not agree with a medication that I was prescribed. I have already eliminated milk products especially high fat ones like ice cream; fats like peanut butter; acids like citrus and tomatoes; chocolate in all forms; and breads more because it is so hard to get in 100 grams of protein if I eat any foods that are not a protein.  I would not have even done the testing if my daughter had not brought up the fact that she thought I might have an undiagnosed condition since she has issues with bloating and another sibling has periodic undiagnosed stomach pain that GI docs throw pills at instead of helping.  Who knew that Bristol scale 5 and 6 were not considered normal especially multiple times a day? I watched my MIL go through basically the same bowel changes starting at 50 so to be honest, I really did think it was normal before this week's appointment.   December 2024's blood tests ran through Quest Labs were:  Deamidated Gliadin (IgA) 53.8 U/mL Above range >15.0 U/mL; Deamidated Gliadin (IgG) >250.0 U/mL Above Range >15.0 U/mL; Tissue Transglutaminase (IgA) 44.0 U/mL Above range >15.0 U/mL; Tissue Transglutaminase (IgG) <1.0 In range <15.0; Immunoglobulin A (IgA) 274 mg/dL In range 47-310 mg/dL 6/16/25 bloodwork:  Until today, I did not really know what all the four tubes of blood were for and since I did not understand the results, I got into the clinical notes to see what was ordered, but it did not exactly explain why for everything. Immunoglobulins IGG, IGA, IGM all came back in range:  IGG 1,010 mg/dL In range 600-1,714; IgA 261 mg/dL In range 66-433 mg/dL; IGM 189 mg/dL In range 45-281.  How do these numbers help with diagnosis? Google says she checked these to see if I have an ongoing infection? I do have Hashimoto's and she did say once you have one autoimmune disease others seem to follow. Celiac Associated HLD-DQ Typing: DQA1* Value: 05; DQA1*DQA11 Value: 05; DQB1* Value: 02; DQB1-DQB11 Value: 02; Celiac Gene Pairs Present Value: Yes; Celiac HLA Interpretation Value: These genes are permissive for celiac disease.  However, these genes can also be present in the normal population. Testing performed by SSOP.  So google failed me.  I think these results basically say I have genes, but everybody has these genes so this test was just to confirm that there is a vague possibility?  Maybe this test result explains why I do not have the horrible symptoms most individuals with celiac have?  I told the GI my assumption is that I am just gluten intolerant since I do not have the pain? So maybe this test explains why I have antibodies? Comprehensive Metabolic Panel: Everything was in the middle of the normal range.  Google says this just says I am metabolically healthy. Tissue Transglutaminase ABS test results – Done by the Mayo Clinic’s Labs –  T-Transglutaminase IGA AB --Value: 3.1 U/mL – Normal Value is <4.0 (negative) U/mL; Tissue Transglutaminase, IgG -- Value: 15.3 U/mL High -- Normal Value is <6.0 (Negative) U/mL – Interpretation Positive (>9.0) – These are the only labs the GI did that have been labeled Abnormal.  I am confused at how/why these came back different than the December labs? Because these numbers seem to be the opposite of what the were in December and I know I have eaten less gluten.  They were definitely measured differently and had different ranges. This must be why she said they are usually opposite? Molecular Stool Parasite Panel said I was Negative for Giardia Lamblia by PCR; Entamoeba Histolytica by PCR and Cryptosporidium Parvum/Hominis by PCR.  So at least I do not need to do a parasite cleanse like everyone on TikTok seems to be doing. So I guess, I am just really asking why the Tissue Transglutaminase numbers are different.  Was it because they were truly different tests? Is it because I have not consumed the crazy amount of gluten one is suppose to eat prior to testing? To be honest, I thought that was only for the biopsy testing. I generally only eat twice a day, and the thought of eating the equivalent of 6 slices of bread is daunting. Even in my youth, I probably only consumed the equivalent of maybe 3 slices a day. Like I said before, now I usually focus on trying to eat 60 gram of protein.  I am suppose to consume 100 grams, but have failed to succeed. I will focus on eating gluten starting in July now that I know my procedure date.
    • Scott Adams
      Worried about being isolated

      By Scott Adams · Posted

      I agree with @trents and wiping down the spot you eat your lunch, and eating the food your brought from home should be safe for even sensitive celiacs. Gluten can jump on your food, so it would likely better better for you to continue eating where you prefer.
    • Scott Adams
      Multiple symptoms and mixed provider responses

      By Scott Adams · Posted

      This article might also be helpful, as you could have DH: https://www.celiac.com/celiac-disease/understanding-dermatitis-herpetiformis-the-skin-manifestation-of-celiac-disease-r6361/
    • trents
      Worried about being isolated

      By trents · Posted

      I would think that as long as you keep your food on a wrapper or on a paper plate you would not be at risk for cross contamination. You may be overthinking it all which is common for those in the first year of the celiac journey. But let me ask you. Are you feeling self-conscious about having a celiac diagnosis? I notice the term "isolated" in your thread title. Do you fear being shunned? I offer this video clip for your consideration:  
×
×
  • Create New...