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Morgan925

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Morgan925 Newbie

Hey Everyone~

Believe it or not, this is my first forum post ever. I wanted to see if any or all had any insights into what I might be going through. I moved to the San Francisco area 4yrs ago from Hawaii. I started a new job and as the new job got underway, I began noticing I was having a lot of fatigue. I waved it off at first, just thinking this is probably related to the stress and anxiety of the job. 4yrs later I still have the fatigue, just significantly worse. I've taken all the necessary steps and tests due to having a healthcare background. First started with the good old sleep study, which of course showed sleep apnea...I'm a big guy~250lb...not obese, athletic. I started the CPAP at night which at first seemed to help, but after a short week or two, same fatigue setting back in. Next, was regular lab tests at PCP..Vitamin D was low...started taking 2000U VitD daily. Fatigue still present...now to the endocrinologist...thyroid all normal...but, testosterone on low normal side and I'm young (30yrs old). Start on testosterone replacement therapy. Began the injectables because I have a young child I don't want to get into the gel as many would understand. Fatigue is still there, not as bad, but there. I started a gluten-free regimen about 1week ago b/c the more I read, the more I feel there is one common denominator to all this fatigue. I've really never had to many GI problems, friends and family would say I go a lot through the day, but never diarrhea or constipation; however, I have had problems with acid reflux now for some time. As you can see, this is becoming a laundry list for me, and up until the last 3-4yrs I have been in great shape, health, and mind.

Does anyone have any insights into this? I like the gluten free regimen so far, and have stuck to it tightly. I actually like the way I'm eating much more now. I stick to raw foods and cook them with light seasoning. Oh and for the caffeine and alcohol question...gave those up when I started gluten free. Hopefully things improve, but in the meantime...any suggestions or advice are very welcome.


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    • Russ H
      There were some interesting talks, particularly Prof Ludvig Stollid's talk on therapeutics for coeliac disease.    https://www.youtube.com/playlist?list=PLRcl2mPE0WdigRtJPvylUJbkCx263KF_t
    • Rejoicephd
      Thank you @trents for letting me know you experience something similar thanks @knitty kitty for your response and resources.  I will be following up with my doctor about these results and I’ll read the articles you sent. Thanks - I really appreciate you all.
    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
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