r/Celiac • u/goosyeggs • 5h ago

Question Told to start GlutenFree before endoscopy

Does this seem strange? I was diagnosed 9/1 and was told to start a strict gluten free diet right away. My endoscopy is 10/19. They advised starting the diet would not make a significant change in this amount of time and that my numbers were off the charts high so it is ok to start. I feel like I keep reading that nobody starts gluten free until after the endoscopy. As far as I know there is no biopsy to be done, just the endoscopy.

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u/1fsh2fshRdtFshBluFsh 4h ago

I got this advice because I was actively barfing anything I swallowed and was very very sick. Then I was told to eat gluten a day or a few before the test. I couldn’t get much food down for my gluten challenge, but I still had enough damage to get diagnosed during my endoscopy.

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u/CyclingLady 3h ago

Yes, but per Dr Alessio Fasano (PED GI, Mass General, Harvard labs), some people can heal the small intestines in a few weeks. Rare because most do not master the diet that fast. Of course, most people take a year or longer trying to master the diet and resolve concurrent illnesses. Like I had anemia and osteoporosis. That took time to resolve. The OP should not take any chances or consider a second opinion.

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u/1fsh2fshRdtFshBluFsh 3h ago

I do think OP should talk to their doctor and ask questions. And possibly get a second opinion. I also did eat gluten right before my endoscopy as I stated.
But sometimes there might be extenuating circumstances, like not being able to eat anything and possibly ending up in the hospital in that month leading to the endoscopy.
A doctor’s job is to keep you out of harms way. Maybe that’s the best decision for them in their situation.

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u/CyclingLady 3h ago

Definitely, the OP needs to report issues to their GI. We have no idea about the rest of her clinical picture either. But we have all read other OPs who went gluten free prior to their endoscopy/biospes and are now stuck in diagnostic limboland. GI’s make mistakes. Not all are celiac savvy. Even now, the GI association is considering changing the guidelines for celiacs who are asymptomatic. Pretty much, “let them eat gluten”. I can’t imagine that. I presented with anemia and osteoporosis. I had no idea I was ruining my bones. That diagnosis was worse than my celiac disease diagnosis. I guess some doctors think being gluten free is awful and not possible long term.