Doctor rescinded celiac diagnosis?

[Redhed]

Hello all,

My journey with celiac disease started in Dec 2019 when I saw a neurologist for migraines. He ran bloodwork and noted that I had a weak positive result for celiac. Since I already had an endoscopy scheduled to evaluate GERD, I asked if the GI doc if he could take some biopsies to check for celiac. He agreed and two weeks later he called me with the result that it showed mild, beginning stage celiac disease but that it was not evident to the naked eye during biopsy. At the time he listed celiac as a diagnosis on the MyChart app.

So, I go gluten free and also start taking vitamin supplements. I feel better than I have in my whole life right now, so I was super stoked to go to go back for a follow up endoscopy and hopefully show improvement.

Well, that was the goal. Here’s what happened:  After the procedure, he comes in to to talk about initial findings from the procedure while o was coming out of sedation. He tells me there is no evidence of celiac and  that I can stop saying I have celiac disease because I definitely don’t have it. I’m so confused. How could it have been invisible to the naked eye previously and it was now just “undiagnosed,” especially since the biopsy results won’t be back for a couple weeks. On top of that, he just removed it from MyChart altogether as a diagnosis?

Do you think I should get a second opinion or be happy that I no longer have this diagnosis despite the evidence shows I likely do?

I’m so confused. I attached photos from the endoscopy if it helps.

Thank you! 

 

[RMJ]

It sounds like you’ve done a good job being gluten free and no longer have damage, but what you say the doctor said makes no sense.

Can you get a copy of the original pathology report from the first endoscopy that did show damage? There should be a record from a pathologist who read the microscope slides from the biopsies.

It is normal to be visible in the biopsies but not to the naked eye during the endoscopy.  It takes a special endoscope with good magnification to see damage during the endoscopy.

[Scott Adams]

Yes, I agree with @RMJ, on this, of course there is no evidence of celiac disease now that you've been gluten-free for so long. The disease never goes away, but all symptoms and the ability to test for it do go away if you are on a gluten-free diet for a long time. Currently you can't be screened for celiac disease unless you go on a gluten challenge for ~6 weeks or more and eat a slice of wheat bread daily. To me it sounds like your doctor needs to get updated on their celiac disease knowledge.

Also, the blood test results you show look very high, almost double the high mark for CD, so I am not sure why your doctor told you it is a "weak positive result."

[Redhed]

Thank you both for your replies. My initial thought was similar. I have to wait until the biopsy results come in before I can talk to him again, but I intend to clarify what he told me and go from there. If he says I'm cured or something like that I think I will have to find another doctor.

Also, @Scott Adams, is htere a way I can delete the images from my original post?

[Scott Adams]

I deleted the scope images, but nothing identifies you on the blood results, which we discuss here. Is it ok to leave that image up?

[Redhed]

12 minutes ago, Scott Adams said:

I deleted the scope images, but nothing identifies you on the blood results, which we discuss here. Is it ok to leave that image up?

Yes, that’s fine. Thank you!

[Redhed]

So, I thought I'd reply to this just for the sake of circling back.

Had a quick conversation with the doctor yesterday, and he must have not looked at my chart before speaking because he thought it was my initial endoscopy. Once I told him it was a follow-up and he looked at my previous results, he did confirm that I do, in fact, "still" have celiac. This time around it was not visible to the naked eye, only on biopsy, so it has greatly improved with the gluten-free diet. 

Think it's still time for a new doctor.

[Scott Adams]

The main thing here is at least you have confirmation, and can begin working towards a full recovery by staying gluten-free. Hopefully your doctor also learned something.