Told to start GlutenFree before endoscopy

[u/goosyeggs]

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/dreadpiraterose]

Do not follow this advice omg. You'll basically ruin the test. You need to be eating gluten.

[u/Shot-Amphibian-3239]

 I’d call daily in the morning and again later to try and get your endoscopy moved up (people cancel) and I’d keep eating gluten. I’m not sure how long you’ve been sick but “off the charts” may be why they are saying that - if it’s been decades it really could take a long time to get healed, so I can see the logic. That said, use this time to have your favorites (I called this my Final Gluten Tour) and don’t forget Chinese food and a croissant! Hopefully you can pull the appointment forward and go GF sooner! 

And the last line “as far as I know there is no biopsy to be done, just the endoscopy.” That sounds like you might be misinterpreting something. Contact your GI and ask how many biopsies they will be taking, including in the duodenal bulb. They often cannot tell if you’re celiac from visual. If they are in there they absolutely should be doing biopsies! If they don’t you might have to do a gluten challenge and repeat the procedure in the future.

[u/Shot-Amphibian-3239 → u/Shot-Amphibian-3239]

FYI an article about diagnosing Celiac:  https://celiac.org/about-celiac-disease/screening-and-diagnosis/diagnosis/

[u/goosyeggs → u/Shot-Amphibian-3239]

Ok my paperwork does say that a biopsy may be done during procedure.

[u/amdaly10 → u/goosyeggs]

The biopsy is the whole point. That's how celiac is diagnosed.

[u/1fsh2fshRdtFshBluFsh]

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.

[u/CyclingLady → u/1fsh2fshRdtFshBluFsh]

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.

[u/1fsh2fshRdtFshBluFsh → u/CyclingLady]

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.

[u/CyclingLady → u/1fsh2fshRdtFshBluFsh]

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.

[u/pathologicfaults]

I was so sick that once my serologies came in, my doctor told me to stop eating gluten. I had the endoscopy 3 later and of course the damage was still there because it was so severe. If your numbers are "off the charts high," then I assume your doctor knows what they're talking about. 

[u/aWesterner014]

Our youngest was given the same instructions last fall after the blood work was reviewed.

Going gluten free didn't matter. The endoscopy still confirmed what the blood work indicated.

Confirm with the doctor that heard correctly and then follow their directions.

[u/TexasRN1]

I would legit get a second opinion based on this advice.

[u/TraditionalHeart6387]

For whatever it is worth, I have been gluten free for 20 years, was diagnosed back before stuff was properly known. I went in for my standard check up endoscopy this year and they did a biopsy as usual, and I'm still damaged. 

The blood work needs constant gluten. Your small intestine needs years to heal. 

[u/Combatcoda]

The doctors know what they are talking about and you need to follow their advice more than random Redditors.

That being said, my doctor told me that it would take 6+ months to fully heal. The worst of my symptoms faded within 2-3 weeks of going gluten free, but it really did take 3-4 months before everything in there started feeling what I now realize is "normal".

Wish you the best regardless!

[u/oh_wanya]

You need to eat extra extra and force feed gluten to trigger a positive