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Egd Came Up Negative For Celiac

alison24060

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alison24060 Newbie
alison24060
Posted

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
happygirl
Posted

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
alison24060
Posted
  • Author

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
happygirl
Posted

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

ravenwoodglass Mentor
ravenwoodglass
Posted
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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