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Very Confused Please Help

Cyndi

By Cyndi
in Introduce Yourself / Share Stuff

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Cyndi Newbie
Cyndi
Posted

Recently I had blood work done and a biopsy of the small intestine. The lab called from the biopsy and said it showed that I have early stages of celiac disease. After waiting a month I called doctors office to find out what the rest of my results were and where I go from here.

The nurse called me and told me that because my blood work did not show positive results and the biopsy only shows early stages of celiac disease that it was not nessary to start glutin free diet and they will see me again in 4 years. What about the pain I went to see him for in the first place? If I keep eating glutin won't it get worse and at what stage of the disease do you start a glutin free diet?

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Ahorsesoul Enthusiast
Ahorsesoul
Posted

Cyndi,

Welcome to the world celiacs! You have just experienced why so many people are suffering.

Your pain will not hurt your doctor at all. It's like telling someone you only have a little cancer, come back later when it's spread and is worse. Someday doctors will get the education they need on celiac disease. I pray that doctors start developing the disease faster than the rest of the population. (pardon to all drs and medical persons here!)

First go gluten free because of your lab reports, you already have damage and it's still early. So let it repair itself the best it can.

Second, imo, find a doctor that understand celiac disease. Call around until you find someone. Doesn't matter if you have to drive to get to their office.

Third, stay tuned here. You will learn more than most doctors know about celiacs.

Perhaps you can tell the doctor that you think his bill isn't worth your time and effort to pay since it's so small. He can call you in four years.

JillianLindsay Enthusiast
JillianLindsay
Posted

Hi Cyndi and welcome,

I just wanted to echo all of the above advice... It may be only the nurse and not the DR providing bad information, try to talk to the DR directly. If you do have celiac disease ("early stages" or not), you should most definitely 100% be on a completely gluten-free diet. It will change your life -- for the better, of course :)

Good luck!

Jillian

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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
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    • 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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