Difficulty with doctors

[jkinloch]

Has anyone else had a gastroenterologist diagnose you with Celiac Disease years ago, only to tell you in 2025 you don't have Celiac Disease?  I'm really frustrated about this.  The doctor tried to make me feel better by saying, "Well, you can eat bread again.  That's good, right?"  I am mostly upset about the 8 years of insults from restaurants for ordering gluten-free, horrible treatment from airlines for being gluten-free, and how much work I have gone through making sure that not even a grain of gluten enters my body.  I don't even know what to do at this point?  Anyone else?

[trents]

Welcome to the forum, @jkinloch!

That is unusual because celiac disease is a genetically based autoimmune disorder. One the latent genes are triggered such as to produce active celiac disease they are "on" permanently. Celiac disease doesn't go away. 

But first, let's establish some fact-based history before we speculate any further about how this change of tune by the GI doc came about.

So, first of all, how did this GI doc arrive at his original dx through normal celiac testing protocols. Typically, this involves two stages of testing. The first is a blood test looking for antibodies that are specific for celiac disease. The second is an endoscopy with biopsy looking for damage to the lining of the small bowel that celiac disease causes. Were either  or both of these done years ago. If so, what were the results?

Were these tests repeated when he/she recently declared you to not have celiac disease? Are you sure you did not misinterpret what the doc said to mean you no longer had celiac disease when what he really meant was that your celiac blood antibodies had now returned to normal and the lining of hour small bowel had now healed. That would not be the same as "not having celiac disease". 

[jkinloch]

Yes, in 2017 I had all of the blood tests and several endoscopies.  All of these indicated Celiac Disease.  I have had endoscopies every few years since, and my last one was a year ago.  This is a new GI doctor for me.  The results he put into my medical record said, "No evidence of Celiac Disease".  Today, he recommended that I start eating gluten again to see if I get sick from it.  I did not misinterpret him or my family practitioner.  I asked several times if his diagnosis actually meant that my Celiac Disease is well controlled.  He said no.   I'm absolutely gob-smacked.  

[trents]

If you have been on a strict gluten-free diet for several years, it would be normal for testing to show no evidence of celiac disease. No gluten, no inflammation. No inflammation, no antibodies and healing of the small bowel lining would result. 

Personally, I think the doc gave you bad advice and I feel confident that trialing a return to gluten consumption would not be the advice that the vast majority of GI docs would give you. If I were you, I would seek a second opinion before resuming gluten consumption. 

[jkinloch]

Thank you!  I needed to hear that:)

[Scott Adams]

I agree with @trents, bad advice! This doctor should know that you've been following the treatment for celiac disease, a gluten-free diet, which typically puts the disease into remission unless you start eating gluten again. Stay gluten-free because celiac disease, unfortunately, is a lifelong disease.

You may want to educate your new doctor on this!