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Egd Came Up Negative For Celiac


alison24060

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alison24060 Newbie

Today I had the EGD to test for Celiac. The doctor did not find any indications of Celiac Disease he did find (from the report):

- Normal mucosa in the esophagus

- Friability in the antrum compatible with gastritis

- At least 12oz. of retained food and flid in the gastric fundus, raising question of gastroparesis

Recommendations:

- Follow-up biopsy results - 2-3 weeks

- continue current medications

- don't begin gluten free diet until or unless biopsies confirm celiac disease.

So the Doctor didn't see anything to indicate Celiac - but the biopsy could still indicate that i do have celiac. This is what I get from this.

Has anyone else had the doctor say he didn't see any signs of Celiac, but the biopsy turned out positive?

I have most of the symptoms listed - stomach issues, diarrhea, potassium deficiency, b12 deficiency, fatigue...etc....


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happygirl Collaborator

Just looking at the intestine does not diagnose Celiac. The biopsies do. So yes, you can "not" see it and the biopsies are positive.

You'll need to make sure that your doctor took 4-6 biopsy samples. Celiac is a patchy disease, and damage isn't uniform.

Have you had the bloodwork run for Celiac?

You may still have a problem with gluten, so at some point, it may be worthwhile to try the diet and see if there is improvement in your symptoms. And of course, pursue other reasons for your symptoms as well.

alison24060 Newbie

Yes I've had the blood work. Only one of the tests came back positive for Celiac. I'm not sure which one though.

I did try the Gluten-Free diet for a little while and once i went back to eating gluten i could tell a difference.

happygirl Collaborator

Were you gluten free at the time of the biopsy? If so, for how long?

ravenwoodglass Mentor
Yes I've had the blood work. Only one of the tests came back positive for Celiac. I'm not sure which one though.

I did try the Gluten-Free diet for a little while and once i went back to eating gluten i could tell a difference.

I find it interesting that the specifically told you to continue eating gluten and then he want to rebiopsy. What that says to me is that the findings are not firmily saying you have celiac so he wants you to keep eating it until the is able to say that your villi are totally destroyed. If you got relief from the diet and then saw a your symptoms return after adding in gluten that was a postive diagnosis. For some reason many doctors want us to be at the endstage of the disease before they will diagnose. Personally I would go back to being gluten-free, and do make sure you check all those meds he gave you with the company that makes them. You do not need a doctors permission to eliminate gluten from your diet, and eliminating it may negate your need to even see this doctor again.

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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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