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Negative blood test and positive biopsy?


BeachBabe22

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BeachBabe22 Newbie

Hello,

I'm 32 years old and I've have chronic diarrhea since I was around ten years old.  I've also had migraines for eight years and scalp plaque for five years.  Within the past few months I also have joint pain where my feet and ankles hurt every morning and tingling in my feet.   I've had a major stomach flare up the past four weeks where I've had diarrhea all day.  Several times I could barely make it a few miles down the road without having to stop and find a bathroom.  I have three little kids so it's extremely difficult for me to be this sick and have to run to the bathroom so many times a day. 

I've had awful doctors in the past who just want to give me a different prescription for each symptom instead of finding out what the cause is.  I finally have a doctor who is working with me and she's been wonderful.  I had a bunch of lab work done and besides my white blood cell count and red blood cell counts coming back low everything else is within normal range.  

DGP IGA:2 

TTG IGA: <2

IGA, QN: 182 

They were checking for celiac disease, ulcerative colitis, and crohns.  I met with a gastroenterologist and I am now scheduled for a colonoscopy and an endoscopy.  They are going to biopsy my intestines and she said that could possibly show celiac disease even though the blood tests came back normal.   I was certain that the diagnosis would be celiac based on all of my symptoms.  Has anyone had negative blood work for celiac but the intestinal biopsy showed celiac?  I am just really hoping for some kind of diagnosis so I can live a normal life and not have to plan my day and my kids lives around how close we are to a bathroom.  

Any advice or feedback is much appreciated!  Thank You! 


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cyclinglady Grand Master

Welcome! 

For starters, you have not had the complete celiac blood panel.  Did you know that some celiacs are seronegative?  

Your doctor seems to be on the right path.  Getting both scopes is a good idea as you may have several issues going on.  

I wish you well!  

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    • trents
      @N00dnutt, been there, done that! Cheers!
    • N00dnutt
      @trents You're right, thanks for pointing that out. On @somethinglikeolivia comment regarding potential ingesting or cross contamination; there is a product marketed in Australia as "GluteGuard" which is designed for just this scenario. It is not a defence for and is not recommended for use by full-blown celiac disease but, it helps those with GI. I'll be reading slower in future so I don't skim over the subject matter. Cheers.
    • N00dnutt
      @Knitty_Kitty Noted with appreciation.
    • trents
      @N00dnutt, as OP explained earlier, she had a gastroscopy done earlier while she had been eating plenty of gluten for months. It was negative despite strong positive antibody scores.
    • N00dnutt
      The best way to determine positively is to undergo a Gastroscope. Your Endocrinologist will assess the condition of your "Villi". These tenticles are what extract the nutrient from what we ingest. The Protein in Gluten is like acid to these tenticles.
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