Endoscopy without Gluten Cjallenge?

[KDro]

I’m scheduled for an endoscopy on June 5 and my MD says I should continue my Gluten free diet. He feels doing a challenge is “cruel” and that my endoscopy will be accurate as damage takes a long time to heal. I’ve been gluten free since mid-March, had blood tests on April 1st (negative). We’re moving forward with procedure b/c I feel so much better not eating gluten. Any thoughts on doing the endoscopy without a challenge?

[cyclinglady]

Yeah!  Consider ditching your doctor.  He is obviously not following the American GI Association’s (or British, EU, etc.) recommendations for celiac testing.  Why is that?  Is he smarter than all the celiac disease experts?  

Damage can take a long time to heal because most people make mistakes on the gluten-free diet.  It also depends on individual patients.  Everyone is different. Dr. Fasano has found that some celiacs have healed in as little as two weeks (intestinal damage).  

If you want to be in diagnostic limboland, go for the endoscopy.  If negative, you will never be able to rule out celiac disease.  

Blood tests?  Which ones?  Did you get the entire celiac panel?  If my GI had ordered the screening TTG only, my diagnosis would never have been caught.  I test positive to only the DGP IgA.  Also, know that about 10% of celiacs are seronegative.  It sounds like you were gluten free when you had the blood tests.  It might have been just long enough to mess up your results if you were just developing celiac disease.  Who knows?  

if you are stuck with your doctor (gosh, is he missing other health issues you my have?), consider remaining gluten free.  Why bother with the expense of an endoscopy?  It sounds like it will just benefit your GI’s pocketbook.

Harsh?  You are the patient and you have rights.  Your doctor may not be able to know everything from medical school, but he can google it or consult with other doctors.  

I hope you figure it out.  Research.  It is your best defense.  Document in writing any further communication with your doctor.  

https://www.ueg.eu/education/latest-news/article/article/mistakes-in-coeliac-disease-diagnosis-and-how-to-avoid-them/

https://www.beyondceliac.org/celiac-disease/Testing-and-Diagnosis/The-Gluten-Challenge/1510/

https://gi.org/topics/celiac-disease/

[kareng]

Why is even doing an endoscopy?  Your blood results were negative for Celiac?  

[cyclinglady]

17 minutes ago, kareng said:

Why is even doing an endoscopy?  Your blood results were negative for Celiac?  

Good question!  Does your doctor think you are a seronegative celiac?  Does he suspect something else like Crohn’s Disease?  

Maybe you should talk to the GI office and not your primary care physician.  Let them know that you have been gluten-free.  Your GI May not know this.  

[rehh05]

Well, I would think your GI doc would want you to have been eating gluten before both the blood test and the endoscopy . That said, this is how my experience went down: I had symptoms and was misdiagnosed for years and years. I met a new friend who suggested going gluten free. I did so about a year before changing doctors and getting tested. My GI doc didn’t care that I was gluten free because he didn’t think anyone was completely gluten-free. I tested negative. He had me have the chromosome test and I tested positive. He had me have a endoscopy as a part of a colonoscopy that he was doing anyway (because I was that age) and he was surprised to find damage consistent with celiac. That is how I was diagnosed. I later found out that my great grandfather had died as a result of celiac, and had two cousins who got rashes from bread. GI sent me to a dietitian who I educated about the gluten-free diet. She didn’t charge me for the visit. I think she was supposed to teach me about it. 

But really, you ought to be on gluten while being tested. You need accurate results. 

[Ennis-TX]

I would say do the challenge if you can, some find it easier to have a slice or two of bread of a tsp or two vital wheat gluten before bed and sleeping it off. But many I have seen took advantage and used to challenge as a gluten bucket list to eat stuff that they could not eat on a gluten free diet IE gooy cinnamon rolls, sourdough bread, deep dish Chicago style pizza, monte cristos, doughnuts, kolaches, strudels, flakey pastries, etc. 

If your doctor is willing to write celiac in your records regardless then do not worry so much. But there are circumstances where having it on the record are nice for when you can not advocate for your supplied food without it like being hospitalized.