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AandGsmomma

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AandGsmomma Apprentice
AandGsmomma
Posted

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
GFinDC
Posted

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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    • trents
      Labs ? Awaiting in person follow up with my GI

      By trents · Posted

      Unfortunately, there is presently no test for NCGS. Celiac disease must first be ruled out. NCGS is thought to be much more common than celiac disease. We know that celiac disease is an autoimmune disorder but the mechanism of NCGS is less clear. Both call for an elimination of gluten from the diet.
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      Labs ? Awaiting in person follow up with my GI

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      Yeast extract

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      Labs ? Awaiting in person follow up with my GI

      By trents · Posted

      Welcome to the celiac.com community, @Seabeemee! The fact that the genetic testing shows you do not have either of the two genes associated with the potential to develop celiac disease (HlA DQ2 and HLA DQ8) pretty much ensures that you do not have celiac disease and the biopsy of the small bowel showing "normal villous architecture" confirms this. But you could have NCGS (Non Celiac Gluten Sensitivity) which would not damage the villous architecture. You could also have SIBO (Small Intestine Bacterial Overgrowth) or H. Pylori infection. Both of these conditions would thrive on carbs and you do say you feel better when you don't eat a lot of carbs. And with your resection of the small bowel, that could be causing it's own problems like you describe. When was that surgery done? You have had over 1 foot of your small bowel removed by that surgery in 2022 so that would certainly challenge digestion and nutrient absorption.  Edited
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