Normal endoscopy?

[adm818]

I’m waiting on my biopsy results, but my doctor said from what he saw during the endoscopy, everything looks normal. I know some people say that the biopsy could still come back positive, but I’m wondering if that’s actually common? Do most people with celiac have visible villi blunting during the endoscopy? Or is it more common than I think for the endoscopy to look normal but the biopsy be positive? 

[Scott Adams]

Celiac disease, almost by definition, involves villi damage, although they are now diagnosing celiac disease more often via blood test results alone. In the past villi damage was basically a pre-requisite to a diagnosis.

After much learning over 25 years, I like to think that villi damage is the end stage of celiac disease, and doctors should use blood tests in most cases to diagnose it, rather than let it reach the stage where villi damage occurs. Blood tests now have the ability to diagnose celiacs before they end up with villi damage (some people would argue that CD still requires this damage, and I'm happy to take up this argument with anyone).

Did you get a celiac disease blood panel done? If so, can you share the results? Were you eating gluten, at least a slice of wheat bread, daily for at least two weeks before your endoscopy? For a blood test you need to eat gluten daily for at least 6 weeks for the test results to be valid.

[adm818]

I have been gluten free for about 5 years, but I ate plenty of gluten for a solid 3 weeks prior to the endoscopy. My doctor wanted to go straight to the endoscopy instead of doing bloodwork so I didn’t have to keep eating gluten and feeling sick.  

[Scott Adams]

If you are still eating gluten-free I would still request a blood test. As mentioned, some celiacs don't have villi damage, or the gastro doctor doesn't take a biopsy in the right area, and the blood results should actually be done in order to diagnose CD.

[adm818]

1 hour ago, Scott Adams said:

If you are still eating gluten-free I would still request a blood test. As mentioned, some celiacs don't have villi damage, or the gastro doctor doesn't take a biopsy in the right area, and the blood results should actually be done in order to diagnose celiac disease.

Got it - thank you. I will ask for a blood test at my follow up appt to be safe.

[Scott Adams]

Please let us know how it goes. Feel free to share the results with us.

[MADMOM]

On 3/25/2021 at 8:20 PM, adm818 said:

I’m waiting on my biopsy results, but my doctor said from what he saw during the endoscopy, everything looks normal. I know some people say that the biopsy could still come back positive, but I’m wondering if that’s actually common? Do most people with celiac have visible villi blunting during the endoscopy? Or is it more common than I think for the endoscopy to look normal but the biopsy be positive? 

i asked for an endoscopy not knowing what i had - my GI symptoms were mild - i began feeling pinching under my ribs and near my belly button - that would not go away - my GI saw mild blunting and then did blood work which confirmed celiac disease 

[adm818]

Just got my biopsy results today - they came back negative! However, after speaking more with the doctor, I’m nervous 3 weeks eating gluten again wasn’t long enough to show up? He said if I was having symptoms, it would show up if I had celiac, and he also said there was no need for bloodwork. 
 

The doctor also told me I should be able to tolerate gluten in small amounts without getting sick, but that is NOT my experience. 
 

Can gluten sensitivity come with very severe symptoms? And is 3 weeks eating gluten enough for the biopsy to be accurate? 

[Scott Adams]

3 weeks of eating a slice of wheat bread each day should be enough for a biopsy, however I don't agree that you should not get a blood test. In fact, the blood test should always be done before a biopsy, and you need to eat gluten daily for at least 6-8 weeks before a blood test.

[adm818]

50 minutes ago, Scott Adams said:

3 weeks of eating a slice of wheat bread each day should be enough for a biopsy, however I don't agree that you should not get a blood test. In fact, the blood test should always be done before a biopsy, and you need to eat gluten daily for at least 6-8 weeks before a blood test.

I agree with you and am seeking a second opinion regarding the blood test. That said, what would the blood test tell me if the biopsy was clear? 

[Scott Adams]

You can read more about endoscopy results here, but there is a possibility that they took samples in the wrong areas, or didn't take enough samples:

Many people get positive blood test results, which means they are having an autoimmune reaction, or are sensitive to gluten, but have a negative biopsy. It's always a good idea to do the blood test, and blood test results are being used more and more now to diagnose celiac disease without a biopsy.

[plumbago]

Also, do you know about allergies? Could you have a wheat allergy? Celiac is an intolerance to gluten. At least it's some good news from the scope and biopsy, but yes, as advised previously, get that blood test (the order actually is, blood test first). Get the complete Celiac panel, not just one or two. Good luck. Let us know.