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Well...it's Been A While, But I'm Miserable :(

jamiecasabellameeks

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jamiecasabellameeks Apprentice
jamiecasabellameeks
Posted

Okay, so it's been a while since I've been on here...mostly because I have been feeling good until the past couple months...So, here is my story, and I'm hoping someone can help...I was diagnosed via blood work then biopsy in February 2013. I've been gluten free since biopsy...with the exception of accidental glistenings and CC. After approximately 2 months on the diet I began feeling AMAZING! I didn't know what to do with all the new energy! Then, I think I began getting a little too "comfortable". I began eating lots of junk really...chips (that were not listed as gluten-free even though no obvious ingredients indicated gluten), chocolate, candy...JUNK! I was also eating a ton of frozen steamer vegetables, which I later found out that that brand states "they can not guarantee that food was not cooked on same line as wheat products". I eat a LOT of baked potatoes (maybe I have a problem with those??) Anyway...I now have proclaimed to not eat ANYTHING unless it is says gluten-free on ingredients. But I still feel so bad. My energy level is virtually non-existent. And it's worse late afternoon/night but not sure why? My joints just ache so bad and the fog/depression set in at night too...Stomach problems aren't my main issue right now. I just need some strength and for my muscles and joints to feel better. I would love to hear anyone's story and to hear suggestions?? Like vitamins you take and love, etc?? I might add I have a 3 year old, 2 year old and 1 year old...I need a "pick me up".

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jamiecasabellameeks Apprentice
jamiecasabellameeks
Posted
  • Author

*glutenings not *glistenings LOL...Stupid autocorrect on my phone.

HumanDecency Contributor
HumanDecency
Posted

When was the last time you were tested for deficiencies? What does your result panel look like? 

 

I would cut out that junk. At least for a few more months and then slowly introduce it as you know you can tolerate it. I know it sucks and you probably want to get back to a normal life as soon as possible but it's hard to say what could be causing you problems in all that junk. If you feel better off of it then it should probably go for now. I take a strong multi-vitamin with iron (pre-natal) but I wouldn't go taking anything unless you have a valid reason. Do you have a doc you see regularly? He can check your levels and tell you what you need or what you're missing. 

 

I hope you feel better and I know CC and glutenings suck. 

Take care, my friend. 

mamaw Community Regular
mamaw
Posted

Just  get  back on  tract, clean  wholesome  gluten-free  foods. And  stick to it....its okay  to  have  a few  snacks &  sweets  now &  then  as  a  treat  but it  isn't  good , only for  weight  gain  to  eat  these  type  of  foods  gluten free or  not...

Think  WILLPOWER.......

feel better  soon....

jamiecasabellameeks Apprentice
jamiecasabellameeks
Posted
  • Author

Hey I haven't been tested for deficiencies in approx 2 months, but I was still a little vitamin D deficient at that time...it's just so hard to pinpoint everything, which is so frustrating...and non-Celiacs just don't understand...I'm dealing with that too. I do have a doc I'm seeing...but I am his first celiac patient. Awesome! NE Mississippi is quite behind...

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    • knitty kitty
      My only proof

      By knitty kitty · Posted

      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
      My only proof

      By NanceK · Posted

      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
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      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.  
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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