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AandGsmomma

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AandGsmomma Apprentice

Hello,

I have been lurking for a while and just joined today. I had horrible stomache pain off and on for years but it isially went away. Well this year after the birth of y second child my horrible stomache pain came back worse then ever. Went to my primary amd they ran blood work and said I had pancrititis and had to see a gi. If it wasnt my pancreas then it was probably a chronoc pain issue that I would just have to deal with the rest of my life. The gi was just as helpful to run a million tests and an endoscopy to tell me I have a sensitive stomach and to tale 80 mg of Omiperzole a day and anti depressents. I refised the antidepressents and would not accept its a chronic pain and all in my head. I went for accupuncture and she suggested I go off wheat simce I have a family history of Celiac. What a difference! I was pff the acid reducer in days and dont have horrid stomach pain, headaches, heart burn or bumps on my legs without gluten. Now I am having a hard time not being angry at all the invasive testing. I later found out I have a bad vitamin B, D, and Calcium deficiancy and that my high liver enzyimes where not due to fatty liver.

Thanks for all the info so far and I look forward to coping and learning as I heal.


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GFinDC Veteran

Welcome to the forum! :) Missed diagnosis is very common. Most celiacs in the USA don't know they have it. Stick around and learn with us. We are a very freindly group when we aren't getting over being glutened. :)

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    • knitty kitty
      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
      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
      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
      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
      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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