Musings and Lessons Learned

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

Hey Kate!

I am certainly not a doctor by any means. All I can do is give my scenario and let you do with the information what you will. 

Your lethargy/fatigue sounds different to mine. Yours seems more physically based. Mine is more central nervous system; like chronic fatigue. My mind plans out a weekend, but I prefer to lay on the floor and do as little as possible. It is really affecting my desire to live my best life. 

It got slowly better after I took out gluten, but around Christmas time, I noticed I was no longer able to draw upon my adrenals or cortisol. They had been well and truly spent. And I have never really recouped from that. By the time Thursday comes, I am done at work. Friday is dragging my butt through the day as best as I can. I come home and flake. 

My ability to keep an even mood and pretence of energy has increased over time. Before, I'd be increasingly snarky through exhaustion by 2pm of each day! I had no idea I had relied so bloody heavily on 3 espressos a day to get me through. Now, I cannot drink more than one decaf a day maxiumum. 

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. 

They say menopause, it takes time, eat more of this or that. No. Something is still wrong and I will find out what. My liver enzymes are elevated, so I now need to look into that. Fatigue is a symptom of liver problems, so I'll see where this leads me.

If this is my new normal, I want my money back. 

I hope you find some way to overcome your fatigue, Kate. We are each on our paths and we will get to the point where we get answers. In the meantime, I intend to cushion my exhausted body and soul. 

I am still on the carnivore diet. I feel pretty darn good internally with it. As soon as I introduce starchy veg, I am hunched over in GI agony. I can eat some lower inflammatory veg, but really have zero desire to. Many of my symptoms have disappeared, such as my painful arthritic toes and knee, all hayfever is nonexistent. I can eat dairy in greater amounts and feel perfectly fine. 

Kate 😀

I have experienced thiamine deficiency.  The fatigue and heavy, tingling limbs, and the mood changes, anxiety, depression, and insomnia, the elevated liver enzymes, adrenal fatigue, and the intolerance of starchy vegetables or carbohydrates are all symptoms of thiamine deficiency.  

I lived through thiamine deficiency.  It began subtly, but symptoms above increased.  It gets worse.

Do either of you two "kates" have any of these thiamine deficiency symptoms?  

Open Original Shared Link

11 Signs and Symptoms of Thiamine (Vitamin B1) Deficiency

And blood tests aren't always accurate.  Please read this to understand how thiamine can still be low despite "normal" blood tests

Open Original Shared Link

Thiamine Deficiency Testing: Understanding the Labs

Please get checked for thiamine deficiency with the proper tests.  The body can keep"normal" levels of thiamine in the blood in order to feed the brain, but muscle cells and other cells are starving for thiamine.  You have to measure the by products produced when thiamine is utilized.  

The World Health Organization has a field test for thiamine deficiency.  Can you rise from a squatting position to the standing position?  

I squatted down in the grocery store to get an item off the bottom shelf.  I could not for the life of me stand back up.  

Please discuss properly testing for thiamine deficiency with your doctor.

Hope this helps!

Knitty Kitty

Knitty Kitty, you might be on to something! I did not know B1 could elevate liver enzymes! I know choline deficiency can cause fatty liver, so these things are worth looking into. Thank you. 

Keight, 

Without enough thiamine to turn carbohydrates into energy, the body uses a shortcut that uses less thiamine and turns carbohydrates into fat.  This may be the explanation for the increase in obesity and NAFLD.  

High fructose corn syrup has to be processed through the liver, just like alcohol, and depletes thiamine stores and causes NAFLD.   

Niacin is also helpful in reducing liver enzymes and triglycerides.  

The eight essential B vitamins are water soluble and need to be replenished every day.  They all work together, and, with Celiac Disease, it's possible to have deficiencies in more than one of the B vitamins.  Because they are water soluble, any extra your body doesn't use is excreted in urine.  

Please discuss with your doctor the benefits of supplementing thiamine and niacin.  I'm not a doctor.  I'm a microbiologist who has done a lot of research.

Recently, scientists have discovered that during thiamine deficiency, the thiamine transporters that allow thiamine to enter cells quit working.  The chromosomes that controls the thiamine transporters are on the same gene as Celiac Disease and Diabetes and other autoimmune diseases we Celiacs get.  In order to turn the transporters back on, high doses of thiamine are needed.  Sometimes results aren't seen until 500mg or 1000mg are taken for several weeks, then the dose can be lowered to 300 - 500 mg a day.  

I have Type Two Diabetes which requires extra thiamine.  I take at least 300mg a day, 500mg if I'm eating more carbs.  I control my diabetes with diet, and by supplementing with niacin and thiamine.  I don't have NAFLD anymore.  My doctor was pleasantly surprised. 

Hope this helps!  Thanks for being interested! 

Knitty Kitty

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!