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Confused - Please Help


Nat1

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Nat1 Apprentice

I am totally confused and would appreciate some help before I see my doc in a few weeks.

I had been following a gluten-free diet (well sort of) on my own for a while because I self-diagnosed myself with gluten intolerance. Several months ago I started having pains in my stomach, on and off. So I had an endoscopy done on the stomach only. The biopsy made them suspect celiac and I had the blood test done which was negative...

When I just talked to the nurse, I told her I wanted an endoscopy done in my small intestines to which she replied they didn't do it. You can only have a colonoscopy or endoscopy of the stomach, not the intenstines. This is where I got confused and asked her how they figured out if the villi in the small intestine was flat or damaged...Now she was confused and didn't make any sense. We both decided it would be better for me to talk to the doctor.

I want to have a clear understanding of this before I see him. So, how exactly does this work? Everybody is talking about endoscopy showing the condition of the villi, so I would think the stomach endoscopy wouldn't do it. What am I missing here? Do they actually do an upper endoscopy for the small intestines?

Thanks for your help!


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psawyer Proficient

Yes, the villi that get examined and from which the biopsy to diagnose celiac disease are in the small intestine. The endoscopy can only see the first part of the intestine, which is over 20 feet long. Celiac disease cannot be determined from a colonoscopy, nor by a biopsy of the stomach lining.

My endoscopy in 2000 showed serious damage to the villi. A repeat in 2005 showed normal villi. I had completely healed on a strict gluten-free diet. If you have been gluten-free, or close to it, there may not be enough damage to be detected.

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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