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Thanks For Understanding...

michiamojersey

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michiamojersey Rookie
michiamojersey
Posted

I just need to vent...

I am so glad that I found this website. Finally, I have found people who can say, "I know how you feel" and you know it's real....genuine. How many times have you all heard that? Do they know what it's like to be doubled over in pain? Do they know what it's like to feel the hopelessness when the doctor refers you to a shrink because he/she can't figure out what's wrong with you...it must be in your head, right? Do they know the embarassment you feel when you have to tell a new boyfriend or girlfriend what it means for you to get "sick"? Do they know the self control it takes to not have a slice when all your friends/family are out for pizza? Do they know how it feels to lay awake at night thinking, "What is wrong with me"?! Have they ever felt that defeat when you accidently get "glutened"? Do they know how hard it is to go through your kitchen, bag everything up and give it away leaving you with bare cupboards...not knowing what you are supposed to eat? Do they know how awful some of this gluten-free crap tastes like? Do their mouths water at the thought of one more warm Krispy Kreme? To all of you that have to order salads with no croutons or cheese....who instinctively have an "escape" excuse just in case you get "that feeling" and you need to leave abruptly....to those of us that are forever explaining our "allergy", (and no, you can't just order a burger and take the bun off). We are troopers that have been through the trenches and continue to march on through this gluten-filled world. I salute you....'cause I know how you feel!

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NoGluGirl Contributor
NoGluGirl
Posted

Dear michiamojersey,

Thank you for posting this! Welcome to the forum! It is nice to find others who understand! :) I have been gluten-free almost a year now. Even so, everyone in my family likes to pretend there is no such thing as Celiac, and if so, I could not possibly have it. :rolleyes: My doctor diagnosed me. Apparently, her word is not good enough.

Getting glutened is a real problem. I have to share a kitchen. I am stuck living with my parents, which is really depressing at 24. They tell me to go out and get a job, yet refuse to help me get or stay well. They do not take this seriously at all. I also could have Lyme Disease.

The world is full of stupid people, and alas, many of them seem to be in my family. I have decided to be adopted. :lol: Have you ever thought "How could I be related to these people?" :huh:

It truly is daunting the insensitivity and selfishness others possess. The other night, my parents got Chinese food yet again. I have not had any in nearly a year, and it makes me want to cry! :(

Sincerely,

NoGluGirl

ravenwoodglass Mentor
ravenwoodglass
Posted

All I can add is you sure are in the right place, and we are glad your here. Unfortunately we can all identify real well with your post. Wishing you the best and welcome.

stef-the-kicking-cuty Enthusiast
stef-the-kicking-cuty
Posted

Amen! I seriously considered putting THAT on a t-shirt... lol!

Welcome to the board :lol:

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  • Posts

    • 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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