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Negative Ecg Biopsy


Ihv2gratkids

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Ihv2gratkids Newbie

Hi everyone, I am new to these boards. I have found some very beneficial information here.

I would like to get some opinions on my situation.

I have had chronic diarrhea for the last 13 years following the removal of my gallbladder. I

was told that this is just what happens. Off and on over these last few years I would wake up

with what felt like a rock in my stomach and I could tell that my food was not digesting

properly. Also on occasion I have had severe heartburn but the doctors just said take tums

and lay of the spicy foods.

In Oct of 09 went to the Urgent Care with severe pain in my stomach

and chest. They were just sure that I was having a heart attack and rushed me to the emergency

room(of course it wasn't). I was told it was acid reflux and I needed to take prilosec for the

rest of my life. Symptoms continued even with the medicine and my throat actually began to close

up. I have also began having severe pain under my ribs and all through my back. After several months

on medicine my GI decided to do and endoscopy. He found that I have gastritis and esophogitis but biopsy was negative for Celiac. He says the medicines I'm on should be working. I take 60mg Kapidex twice a day and a

perscription strength pepcid before bed with no changes. The last time I went to GI he threw his hands

up and said he had no clue what was wrong with me. (Makes me feel helpless) With no other ideas he sent

me for a full body CAT scan. They found a few spots on my lungs which sent me to see a Pulmonologist.

He is running a series of blood tests for auto immune diseases but didn't test for Celiac because

my biopsy came back negative. Should I just let this go or try to find a doctor that will pursue my

concerns. This constant pain in my chest and back is so bad that I don't know how much more I can take. I will

try anything. I am so frustrated with doctors right now. My faith in God is what is getting my through all

of this.

I have been eating gluten free for about a week and can tell a very slight decrease in my

symptoms. Should I keep going?

Thanks everyone


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  • Posts

    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
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