Test results and question about gluten challenge

[squirmingitch]

Hooray, hooray, hooray!!!!!! I too hope you get a definitive answer! Let us know ho wit goes please.

[cyclinglady]

??

[chocolatesunrise]

thank you!  Yes, I will update afterwards!

[chocolatesunrise]

So I did my prep, my husband took the day off work and I went in for my endoscopy this morning only to be told they have to reschedule me!!  I’m so frustrated and mad. I made a point of telling the doctor at my first appointment that I’ve had Versed in the past and it doesn’t work well for me.  I’m still very awake and aware and so I was concerned about a procedure with only that as a sedative. Well I guess he didn’t believe me and after getting me all hooked up to monitors I asked the nurse when the anesthesiologist was coming in and she just gave me this blank stare and said “there isn’t one”. What?!?  So when I again stated my concern about sedation she brought the doctor over who informed me that since I have a history of inadequate sedation with Versed that they need to reschedule me with an anesthesiologist. Are you kidding me?!?  I did the prep for nothing?!?  I tortured myself with gluten for the last 4 weeks for nothing??  Ugh. I am so upset. To top it off nobody from his office will even call me back about when they can reschedule me. I had to wait 6 weeks for this appointment. I’m not doing this for another 6 weeks. I feel like I’m out of options at this point and I want to give up. I’m leaning towards just assuming I have celiac or at least gluten intolerance and going off gluten. Ok. Rant over. ??

[ravenwoodglass]

So sorry this happened to you. Versed doesn't work for me either. Sounds like your doctor doesn't listen very well. I ended up changing doctors and having my endo done by a doctor who really listens to his patient. You may want to call your insurance company and tell them what happened cause I can assure you the doctors office will try to charge you anyway. I don't remember if you did but if you had positive blood work I would consider just going gluten free and then rechecking antibody levels in six months or so.

[cyclinglady]

I am so sorry.  

[chocolatesunrise]

Thank you for your kind words. I’m emotionally drained and discouraged. I feel like it was a mistake to even try and get my strange GI symptoms diagnosed. Maybe it is all in my head and I’m just crazy. I’m tired of having to explain myself over and over and having nobody take me seriously. This is the third GI doctor I’ve been to and I’m just done. I can’t keep beating my head against this wall.  ??

[ravenwoodglass]

It's not in your head. I am so sorry your doctors have let you down so badly. You're not alone in that so don't lose heart. ((((((((HUGS))))))))

The GI who finally diagnosed me asked what was the best part about being gluten free at a follow up. I told him 'not being woken up by gut wrenching pain and 2 to 3 hours of D every night'. He asked why I didn't tell him that was happening since the 'IBS' I had been told I had didn't wake someone up.  I told him I had, many times. He just wasn't listening.

While it is ideal to get a doctors diagnosis sometimes we have no choice but to take our health in our own hands. You could talk to your GP to have vitamin and mineral panels done as those can be ordered by any doctor. The GP can even order repeat celiac panels.

[squirmingitch]

Ohhhhhhhhhhhhh man! I know you are devastated!!!! What a major, major let down. I would be hair pulling livid!!! There are no words for this debacle. Inexcusable!

I agree with the others & it is NOT in your head!!!!

[chocolatesunrise]

you guys are the best!!  I so appreciate the encouragement.  I did get a call finally from the GI office and they have me scheduled AGAIN for next week with an anesthesiologist.  So I have to do the prep again which sounds amazingly fun but I can suck it up and eat gluten for 5 more days.  

[squirmingitch]

I can't even say how sorry I am that you have to eat gluten for another 5 days! Aw geez! It must feel like you're stuck in the movie Groundhog Day.

Sending you some really big, very gentle virtual hugs. {{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}

[chocolatesunrise]

4 hours ago, squirmingitch said:

I can't even say how sorry I am that you have to eat gluten for another 5 days! Aw geez! It must feel like you're stuck in the movie Groundhog Day.

Sending you some really big, very gentle virtual hugs. {{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}

Lol!!  It is like Groundhog Day!!  Thank you again for your understanding.  ?

[Keight]

Yikes. Not a stack of fun. I think it wise, though, to reschedule with an anaethstatist. 

 

Fingers crossed it all goes well for you this time. 

 

I understand all too well about feeling crazy and it is all in your head. I had many symptoms of mild haemophilia, some that landed me in hospital for weeks, yet not a single dr thought about haemophilia. It is a male only disorder. I was told all the pain etc was in my head. 

 

Erm, symptomatic carriers CAN get mild haemophilia I am now told. *told them so, but who am I??*

[chocolatesunrise]

7 hours ago, Keight said:

Yikes. Not a stack of fun. I think it wise, though, to reschedule with an anaethstatist. 

 

Fingers crossed it all goes well for you this time. 

 

I understand all too well about feeling crazy and it is all in your head. I had many symptoms of mild haemophilia, some that landed me in hospital for weeks, yet not a single dr thought about haemophilia. It is a male only disorder. I was told all the pain etc was in my head. 

 

Erm, symptomatic carriers CAN get mild haemophilia I am now told. *told them so, but who am I??*

There is nothing more discouraging and maddening then being dismissed when you know something is wrong. I think often the medical world doesn’t want to be bothered with patients who have symptoms that don’t neatly fit into a simple diagnosis. They don’t want to spend the time or put in the effort to “work” for a diagnosis. It just baffles me...why go into medicine as a profession if you don’t want to invest in patient care and using all that knowledge from medical school to diagnose people?!?  I’m so sorry to hear you’ve also been placed on the “crazy train” as I call it. Lol. It feels like the only way to get off is to get a diagnosis so you can finally prove to the world you aren’t just making stuff up!!  

[chocolatesunrise]

Update-

Had my EGD and sigmoidoscopy this morning. Everything looked normal on exam. Hmph. ? The doctor said he took 6 biopsies so I will get those results next week.  It’s looking like this testing isn’t going to give me an answer. He said he’s ordering a small bowel series. Sounds fun. ?

[cyclinglady]

Does your GI have the latest and greatest scope with super magnification?  If not, you have to wait for the pathologist’s report.  My endoscopy looked normal when I was diagnosed.  The pathologist’s report revealed a Marsh Stage IIIB.  

The sigmoidoscopy only checks a portion of the large intestine (colon), so it sounds like he used his own equipment.  

Wait for the report.  

Edited September 19, 2019 by cyclinglady

[chocolatesunrise]

10 minutes ago, cyclinglady said:

Does your GI have the latest and greatest scope with super magnification?  If not, you have to wait for the pathologist’s report.  My endoscopy looked normal when I was diagnosed.  The pathologist’s report revealed a Marsh Stage IIIB.  

The sigmoidoscopy only checks a portion of the large intestine (colon), so it sounds like he used his own equipment.  

Wait for the report.  

Good to know!!  The pictures don’t look like he had tons of magnification or anything. My colon looks quite clean so brownie points for doing a good prep at 4 this morning. ??. I see him Tuesday to go over biopsy results so we shall see. I’m assuming at this point I can ditch gluten right?  ??

[chocolatesunrise]

Ok....hold up. I just looked in my handy online portal and it shows a procedure report. It states biopsies were taken of my colon but doesn’t say any were taken of my duodenum!!!   I even specifically confirmed with the doctor minutes before my procedure that he would be taking at least 6 biopsies to look for celiac disease and he assured me he would. I’m hoping it’s just a typo but I fear it isn’t. He was so adamant all along that he didn’t think I had celiac disease I’m scared he just blew me off and didn’t even biopsy the right part!!  Just had to vent....I’m so mad!!   This whole process has been an absolute nightmare. ???

[kareng]

4 minutes ago, chocolatesunrise said:

Ok....hold up. I just looked in my handy online portal and it shows a procedure report. It states biopsies were taken of my colon but doesn’t say any were taken of my duodenum!!!   I even specifically confirmed with the doctor minutes before my procedure that he would be taking at least 6 biopsies to look for celiac disease and he assured me he would. I’m hoping it’s just a typo but I fear it isn’t. He was so adamant all along that he didn’t think I had celiac disease I’m scared he just blew me off and didn’t even biopsy the right part!!  Just had to vent....I’m so mad!!   This whole process has been an absolute nightmare. ???

Hopefully it’s not a complete report.  Give it a day or two before you freak out.  It may have split the report into individual parts?  

[chocolatesunrise]

The report lists all the findings for the EGD. then on the next line lists findings for the sigmoidoscopy and states “samples were obtained from the mucosal lining of the colon and submitted to pathology. “ I’m really hoping it’s just a mistake too!!

[squirmingitch]

Can you call the doctors office & get clarification?

[cyclinglady]

I am shocked!  I am also hoping that you did not receive a complete report as Karen suggested.  

[chocolatesunrise]

My primary care is calling the lab this morning to find out what samples were submitted. I left a message at the GIs office as well. 

 

As a random side note...anyone else wake up with a swollen traumatized lip after EGD?  My lower lip on the right is all swollen and painful with ulcerations on the inside. I’m guessing they mushed it up against my teeth??

[chocolatesunrise]

Just an update to not leave anyone wondering. ? They moved my follow up appointment because the doctor ordered a small bowel series and they want me to do that before I see him. So I haven’t gone in for biopsy results yet. I asked the nurse and she said there was no cancer and that the report read no pathology. So I guess I don’t have celiac?  She wouldn’t really commit to saying it was normal but it sounds to me like it is. So I guess I’m back to square one. I suppose it is good news but I was so hopeful I would finally get a diagnosis so it’s hard to go back to my usual just not knowing and constantly second guessing what I can or cannot eat. ? Thanks for being there on my journey down this diagnostic rabbit hole!!  

[Ranchers Wife]

Maybe it's just me... but after all that you've been through, I would confirm that:

There were at least six biopsy samples from the duodenum sent to pathology

And

The biopsies shoe normal villous architecture according to the pathologist s magnified view

Before I would agree to more medical testing with this physician.

If it turns out that your doctor didn't take duodenal biopsy samples, don't go back! Is my advice. I'm not a doctor but if he's trying to diagnose or rule out Celiac by taking large intestine samples, he's not up on current Celiac diagnosis standards.