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Negative blood test and positive biopsy?

BeachBabe22
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BeachBabe22 Newbie
BeachBabe22
Posted

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
cyclinglady
Posted

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
      Celiac flare years after diagnosis

      By trents · Posted

      Unless gluten exposure is happening on a regular basis, it is doubtful that blood antibodies would show up elevated in testing. It takes time for them to build up to detectable levels.
    • Russ H
      Celiac flare years after diagnosis

      By Russ H · Posted

      HI Nancy, In your first post, you said that you were diagnosed by biopsy and blood test - this is what I was referring to: the blood test is for antibodies that are made during active disease. After a period on a strictly gluten-free diet, the antibodies return to low level. It is a good way of checking for accidental exposure if symptoms persist. If you are reacting to foods that don't contain gluten, you may be reacting to something else. Alternatively, a condition called SIBO is common in people with coeliac disease, where there is an overgrowth of bacteria in the small intestine. This can be tested for with a simple breath test. The main treatment is with a course of antibiotic. Small Intestinal Bacterial Overgrowth (SIBO)
    • Aretaeus Cappadocia
      Skin issues

      By Aretaeus Cappadocia · Posted

      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      Celiac flare years after diagnosis

      By trents · Posted

      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
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