Post-Endoscopy Questions

[confusedandsick]

Hello, I was urged to get an endoscopy by both this website and my doctor. I made a post about not being able to do a blood test because I couldn’t eat gluten without vomiting/going to the bathroom for days straight. So… before this procedure, I went gluten free for ~2 months. I ate gluten a week before this procedure. I’m not exactly sure how accurate this will be… BUT… my doctor told me there was inflammation in my small intestine, as well as a slight bowel obstruction. He described it as “a narrowing of the intestines” He was also very concerned about my acid reflux and urged me to start taking OTC medications for it. They had to dilate my esophagus. Did anyone else get these results? Similar experiences? Were these results what led to your celiac diagnosis? I’m curious.  
Does this mean that time period I ate gluten was enough? It was definitely enough to cause noticeable damage, so I’m hoping for the best. I’m getting my biopsy in a week. 
Any endoscopy/diagnosis experiences similar? Do tell!

I am also getting a genetic test within the next few weeks. We will see what happens I guess. 

[Nick Cheruka]

42 minutes ago, confusedandsick said:

Hello, I was urged to get an endoscopy by both this website and my doctor. I made a post about not being able to do a blood test because I couldn’t eat gluten without vomiting/going to the bathroom for days straight. So… before this procedure, I went gluten free for ~2 months. I ate gluten a week before this procedure. I’m not exactly sure how accurate this will be… BUT… my doctor told me there was inflammation in my small intestine, as well as a slight bowel obstruction. He described it as “a narrowing of the intestines” He was also very concerned about my acid reflux and urged me to start taking OTC medications for it. They had to dilate my esophagus. Did anyone else get these results? Similar experiences? Were these results what led to your celiac diagnosis? I’m curious.  
Does this mean that time period I ate gluten was enough? It was definitely enough to cause noticeable damage, so I’m hoping for the best. I’m getting my biopsy in a week. 
Any endoscopy/diagnosis experiences similar? Do tell!

I am also getting a genetic test within the next few weeks. We will see what happens I guess. 

Hi, hopefully the biopsy sheds some light on this situation for you! I am going to say from prior experience of being a diagnosed celiac for over 20yrs by bloodwork, biopsy and genetic testing that being gluten-free for 2-months prior to your endoscopy with only 1 week of ingesting gluten your doctor should have probably advised you to be consuming gluten for at least a month or more to give your immune system time to respond to gluten in your system where they may then be able to see villi damage caused by gluten! Hopefully your genetic tests sheds more light, you either have the two genes needed or one or the other or neither if it’s that you don’t have  the genes for celiacs or one of them like myself you don’t have celiacs you’ll have to keep looking! Have you tried a GI Dr. who specializes in Celiacs? 2nd and 3rd opinions from other GI Dr’s is a good option as well! Good Luck☘️I hope this helps! It took me over 4yrs back in 2001 to get my Celiac diagnosis hopefully you find answers sooner!

[confusedandsick]

On 9/1/2023 at 7:00 PM, Nick Cheruka said:

Hi, hopefully the biopsy sheds some light on this situation for you! I am going to say from prior experience of being a diagnosed celiac for over 20yrs by bloodwork, biopsy and genetic testing that being gluten-free for 2-months prior to your endoscopy with only 1 week of ingesting gluten your doctor should have probably advised you to be consuming gluten for at least a month or more to give your immune system time to respond to gluten in your system where they may then be able to see villi damage caused by gluten! Hopefully your genetic tests sheds more light, you either have the two genes needed or one or the other or neither if it’s that you don’t have  the genes for celiacs or one of them like myself you don’t have celiacs you’ll have to keep looking! Have you tried a GI Dr. who specializes in Celiacs? 2nd and 3rd opinions from other GI Dr’s is a good option as well! Good Luck☘️I hope this helps! It took me over 4yrs back in 2001 to get my Celiac diagnosis hopefully you find answers sooner!

Hi, thank you for the kind wishes!

So the reason why I didn’t eat gluten a month in advance is because my reaction to gluten is so severe that last time I attempted to eat gluten longer than a week I almost ended up in the hospital. That’s why they did an endoscopy/biopsy with a short gluten trial along with the genetic test. I suppose it’s an attempt at “harm reduction” so nothing crazy happens to me. I guess my question is, “is that time period actually enough?” 🤔 

I did really want to go for longer but the pain was so bad I was practically bedbound  I’m not sure how other people get through it, it sucked having to give it up like that  

I will only know in about 1-3 weeks depending on which results, I guess I just want to know if anyone else had the same results from the endoscopy. That small intestine inflammation, the partial intestinal blockage, etc. It also makes me wonder if that damage is from the past few years or from the past week. That’s definitely scary if that damage was only from the past week. I have a lot of questions + confusion about this whole thing… but thank god I don’t have to doubt my pain anymore! 

[Scott Adams]

To me it seems that you have your answer anyway--gluten is your enemy right? Can I ask why getting a diagnosis is so important at this point? I ask, because the only real way to do this is via a gluten challenge:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

[confusedandsick]

On 9/12/2023 at 2:40 PM, Scott Adams said:

To me it seems that you have your answer anyway--gluten is your enemy right? Can I ask why getting a diagnosis is so important at this point? I ask, because the only real way to do this is via a gluten challenge:

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

I honestly know it’s celiac — especially due to the small intestine inflammation and what my doctors told me. I guess I wanted the biopsy result as well because I’m so used to people doubting my conditions. I didn’t want to be invalidated again as I was for so many years. I think what I have right now is enough, I’ll get the genetic testing then figure out what the heck else is wrong with me. 
I got some really confusing (and concerning) results and was also a little woozy off of the anesthetic when I posted this (lol). 
I think I can just end my diagnosis journey at the genetic testing because I know it’s the gluten and my small intestine. I think that is enough for me. 

[Scott Adams]

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

[Nick Cheruka]

On 9/12/2023 at 2:40 PM, Scott Adams said:

To me it seems that you have your answer anyway--gluten is your enemy right? Can I ask why getting a diagnosis is so important at this point? I ask, because the only real way to do this is via a gluten challenge:

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

Scott why wouldn’t anyone having GI issues Not want a concrete diagnosis? Anyone with GI issues that they have no idea where it comes from would and should get a concrete diagnosis even if they suspect it to be caused by gluten! You need to get to the root of the problem in order to be able to fix it, no matter what it is and as far as Celiacs this means a life long elimination of gluten which can be hard in so many ways and if it is not gluten it could be something else in the foods eaten causing the problems so why assume it’s the gluten if it may not be? The reasons for finding out the cause of the problems so they can be fixed. Just guessing gets your health no where and definitely not better for sure based on just assumptions thats why there are Dr’s of all kinds as well as specialist! Why go on a lifelong gluten-free diet/lifestyle if thats not needed until you get concrete evidence that you do? I agree with the gluten challenge that is how anyone can figure out a concrete answer, not just assuming or self diagnosing. Good Luck Confusedandsick☘️I hope you get the concrete answers with Dr’s and Testing you need! God Bless🙏

[Scott Adams]

Unfortunately for many people getting a "concrete diagnosis" isn't feasible, or may not be safe. Some people just have symptoms that are so bad that it would be dangerous for them to eat two slices of wheat bread for 8 weeks. Many people do get all the tests, but have mixed results, for example a positive blood test, but a negative biopsy, or vice versa. Then there are people who may not want to have the diagnosis on their medical record--it does trigger higher private health and life insurance rates, which will stay with you for life, and make a life insurance policy, for example, quite expensive.

In general I lean towards getting a formal diagnosis, but there are good reasons not to get one, and sometimes it just isn't possible to get one.  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. Most people here likely fall into the NCGS category, thus getting a formal diagnosis is currently very difficult, or not even possible yet.