Celiac Disease & Gluten-Free Diet Blogs

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: https://www.platinumperformance.com/articles/canine-companion-with-a-cause

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! 

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