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Thank You

WinterSong

By WinterSong
in Coping with Celiac Disease

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WinterSong Community Regular
WinterSong
Posted

I wanted to say thank you to everyone on this forum. 

 

I've been reflecting a lot on where I was 2 1/2 years ago. I was the first of my friends to be diagnosed (since then, several of my friends/family have gone gluten-free), and during a very difficult and emotional time in my life it was a godsend to know that I wasn't alone. I had friends with funny screen names who would answer my questions, calm my anxiety, or share in my frustration.  

 

I see posts from people who are struggling or are newly diagnosed, and I see people reply who have been on this board consistently for years. The unwavering support that we have as a community is an incredible thing. We are impacting each other's lives in a truly meaningful way.

 

To those on this board who are new and feel like you are alone or aren't understood by your friends/family - it does get better. You are not alone. We are here for you.

 

I am proud to be a Celiac. I am proud to be taking charge of my health. I am proud to be a part of this wonderful, supportive community. We are awesome.  B)

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notme Experienced
notme
Posted

me too!  i would have never been able to navigate these strange waters without the help of the many kind people on this forum :)  everybody starts at the beginning!!  i'm glad you are feeling better!  (i am too!)  it truly is a huge resource of interactive experience/advice - hopefully urban myth dispeller - from people who have 'been there, done that, got the t-shirt' lolz ^_^

GF Lover Rising Star
GF Lover
Posted

This Forum is also what got me through the gluten-free Transition and listened to me vent when I needed to.  IrishHeart personally got me through dehydration issues and helped me cope with wicked migraines and let me cry on her shoulder.  I have made many friends here and hope to pay forward what I have learned.

 

Colleen

mbrookes Community Regular
mbrookes
Posted

I can double up on the previous comments. There is no support group in my area, so I have turned here repeatedly, always with good results.

When I was diagnosed 6 years ago the hospital dietician said " I don't know much about this. Get on the internet". So I did. Six years later I am almost an expert in all things gluten free. Thanks, all you folks who have helped me out. I will continue to help anyone I can.

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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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