Kate333

Hi Keight and KK, thanks so much for your detailed responses!

KK, thanks for the comments/suggestions.  My recent B12 test and others were all normal. I already take daily multivitamin, but I will also ask my doc for additional tests of thiamine, magnesium, iron, adrenal levels just make sure something is not being overlooked.  

Keight, your comments esp. ring a bell with me:

"I suspect my poor body has been needlessly flogged for years. Probably all my adult life. It simply gave up and metaphorically collapsed last year. I could not last a week's holiday alone in Kuala Lumpur. I spent the last three days of my vacation in bed. It was that bad." 

"I want, so desperately, to have the energy to do things, to be things, to give. But I truly have very little energy for my daily necessities. On paper, things are looking good, but I am back at the dr again, begging for some way to find out why I am still dragging myself through each week."

That is EXACTLY how I feel EVERY DAY!   For me, I reached that breaking point "collapse" and downward spiral--not just metaphorically, but literally--last June, when I ended up in the ER fearing a heart attack or stroke after a really terrible day at work (rude client and boss both screaming at me during back-to-back phone arguments).  After I hung up, I tried to deep breath/calm down but immediately had a sudden, severe headache/heartburn--the worst of my entire life. (I NEVER had headaches before in my life).  Thankfully, all the physical tests were normal but the doc did say I had a full-blown panic attack which made my blood pressure suddenly spike through the roof, causing the headache and heartburn. (I also had no history of panic attacks and my low blood pressure was always in the slow normal range.)  I was very relieved I wasn't about to die. 

But there is nothing like lying in an ER alone, hooked to a beeping EKG machine and fearing imminent incapacity/death, to make one "wake up" and take long-overdue stock of one's life and health.😵  That day, I FINALLY understood I needed to listen to--not minimize or ignore, as I had for years--even subtle "hints" my body/mind was sending me for YEARS (insomnia, anxiety, depression, fatigue, bad jobs, job burnout)....because if I don't listen and, more important, make changes/seek help, it WILL eventually end up in full-blown physical/emotional crisis. 

After quitting that job last year, I hoped and expected to slowly but surely feel more rested, energized, relaxed after a few months of no work.  Instead, no real change.  In Sept. I began to notice sudden bout of severe IBS-like symptoms (constant D, C, gas).  I thought it was just a flu bug or a bad meal.  I tried probiotics, bland diet for a few weeks.  No improvement. That's when I got a gluten blood test (abnormal--224) and EGD/biopsies (normal "no celiac sprue"; "mild inflammation").  I started gluten-free diet late last year/early this year.  Subsequent blood tests show definite decline (down to 73) but still not nearly "normal" range yet.  All other blood tests show normal vitamins/minerals.  TSH normal range.  Yet I STILL feel exhausted/entire body sore/stiff 24/7.

I suspect much of my ongoing, current fatigue is related to plain old "burnout" and chronic depression issues which, of course, are only deepened by this new diagnosis, CV pandemic, and unemployment since last year.  Thus, I think I will give the anti-depressant a try and see if that helps.  I also plan to try MH counseling.  I live alone and the isolation, esp. during CV, only magnifies our health worries.  Perhaps I should get a pet.  Here's an interesting article about "service dogs" who can actually detect gluten: Open Original Shared Link

Sorry for the long-winded post..and thanks for reading eveyone!..This chatroom certainly helps me feel less alone as I navigate life's challenges! 

Hi Keight.  BTW love that name.  As another Kate, I thought I already new every possible way to spell my/your name..:).

Congrats on your latest bloodwork and I hope your upcoming blood numbers are headed in the right direction...

A few Qs about your fatigue symptom:

Could you pls. describe your fatigue, how did your body feel when it was its worst level? 

And how long did it last before you noticed your fatigue begin to lift on your gluten-free diet? 

I am newly diagnosed and have had AWFUL FATIGUE (downright exhaustion really) for months.  I was diagnosed Celiac  late last year but the fatigue kind of first developed gradually.  At first, never having even heard of gluten/C issues before, I and my PCP just chalked it up to chronic, very bad depression.  It all kind of crept up on me gradually, mild at first, then gradually got worse as the year passed.  I honestly thought it was due to overwork, stressful job, constant out of town travel, chronic insomnia, and plain old aging... I also have a history of chronic depression/anxiety/insomnia.  I know bad depression/insomnia can also cause extreme physical fatigue, muscle aches, weakness etc. ("atypical depression" it's called). 

Anyway...here's how I feel:  My whole body--esp. arms and legs--ALWAYS feel like heavy, wet, wobbly sandbags 24/7 and has since last year.  It is literally a HUGE struggle to even lift up my feet/arms, walk, my damn cellphone and call anyone...My muscles are also tight, sore, weak.  I am trying to figure out how differently (or alike?) Celiac-related fatigue FEELS vs. depression-related fatigue so I can decide it's worth a try to take antidepressant before improving my gut on gluten-free diet.  BTW, my blood work shows vitamins/minerals also in the normal range, so at least I know I am not deficient in iron or vitamin B, D, or magnesium.

I assume you aren't a doctor, so I certainly don't expect any diagnoses or medical advice.  But I don't know any other celiacs to ask and my own MDs seem to know little about celiac fatigue, so not sure how it affects you. 

Thanks for any comments....and best of luck on your healing journey... It sounds like you are making real progress!    

Kate