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Tia Like Symtpoms When Glutened?!

DestinyLeah

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DestinyLeah Apprentice
DestinyLeah
Posted

So I accidentally got glutened through misinformation the other day while out on the go. Shortly after, I was slurring my words, couldn't get a thought completed to save my life (except to remember the "FAST" mnemonic for a stroke) and went weak down the left side of my body and fell into the shelves at Wal-Mart. Great start to my day. So I went home to get some rest and took a potassium and a b-12 supplement, and thought everything was fine, until about 3 hours later when it happened again. The third time this happened was at 1:30 in the morning, and left behind the worst migrane I have ever had. Ben took me to the ER, where they looked at me as though I had completely lost my mind for coming in and telling them what I thought was wrong, nevermind that I am the first female in 5 generations of my family to not go to any medical schooling. I asked for a CT scan to rule out a Transient Ischemic Attack, and blood tests to rule out any major nutritional deficiencies. The doctor instead put me on narcotics and gave me the CT scan, then asked what Celiac was, refused to run blood work, and sent me home saying it was just a migrane, not Celiac related (How would he know?!?! Ask me?) with a prescription for a non gluten-free narcotic. Way to go, buddy!

So does anyone else get stroke-like symptoms when they get a LOT of gluten in their system? Hoping this is not just me...

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Ursa Major Collaborator
Ursa Major
Posted

I had jerk doctors like that in the ER in my local hospital as well. Doesn't it make you soooooooo mad to be treated like a joke? It makes me angry on your behalf that you have been treated like that.

Yes, I get symptoms like that as well. And narcotics make my migraines worse.

You should go and be tested for nutritional deficiencies anyway, ordered by your regular doctor. What comes to mind is vitamin D, vitamins B6 and B12, ferritin, calcium and magnesium, potassium and vitamin K.

I avoid my ER like the plague now, after being treated like garbage there several times. I know I take chances by not going when I have heart-attack-like symptoms (which is what happens to me when glutened). But I just can't handle going any more.

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      My only proof

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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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