Not sure what's going on.

[Lilbarista]

Hello,

two years ago I started having bad stomach issues. I felt like someone had been stabbing me in my right side constantly. I was sent to the gastrointerologist and she ordered a ton of test, including TSH tests and celiac tests. She did an MRI and everything came back fine but my stomach pain still hadn't gone away. She put me on a probiotic (I had a bladder infection previously and they treated me with 3 different antibiotics) to get my gut back to where it was. My stomach issues never got better though. I started having a lot of body aches and I was constantly tired. I slept 10 hours a day and felt like I could sleep another 10. I was skipping periods for 3 months in a row and something just didn't feel right. I felt sick all the time and depressed because I couldn't get better. Finally I went and saw a Gynecologist and she told me I had hypothyroidism and PCOS. She had put me on pills for my hypo but I had to come off of them due to a bad reaction. I went to the endocrinologist after that and had more tests done and was finally diagnosed with hashimotos. All of this time my stomach was still hurting really bad. I couldn't figure out why but one day I ended up going to the emergency room because I thought my appendix was inflamed. Everything was fine though when the doctors checked it. I still get pain in my lower right side as well as my left side in my rib cage area. I had X-rays done of my rib area and lungs. Those tests came back fine though. Sometimes the pain takes my breath away and makes it hard to breathe. I went back to the gastrointerologist and she ordered more tests to be done after mentioning that I was still having pain. My blood tests came back fine except I have low iron and high B12. She's doing a colonoscopy and endoscopy in 2 weeks. I just don't know what to do for my stomach pain anymore. I've tried gluten free for a month and that helped a lot. I just want answers and I feel like I'm starting to get them. It's not fun dealing with all of this before I'm 18. I'm planning to go to college soon and I just want to be well. 

[CherylS]

Hopefully you will get some answers after your scopes.  It's frustrating.  

[mommida]

Have you had your gallbladder checked?  The pain is in your lower ribs on the right side (front) and even feels like someone is stabbing you in the back?  If you go in to urgent care or emergency when the pain is bad and your stomach is extra gurgly they might just take it out that night. "off to college" you must be younger and don't fall into the common age bracket when the 4 F's are diagnostic.. Fair, Female, Fertile (still fertile but towards the end of fertile years)/Forty, some say Fat is on the list too. There is also a connection to a non-functioning gall bladder and untreated Celiac.

Have you noticed if the pain is made worse by eating high fat food?  i.e. Salami

[cyclinglady]

1 hour ago, mommida said:

Have you had your gallbladder checked?  The pain is in your lower ribs on the right side (front) and even feels like someone is stabbing you in the back?  If you go in to urgent care or emergency when the pain is bad and your stomach is extra gurgly they might just take it out that night. "off to college" you must be younger and don't fall into the common age bracket when the 4 F's are diagnostic.. Fair, Female, Fertile (still fertile but towards the end of fertile years)/Forty, some say Fat is on the list too. There is also a connection to a non-functioning gall bladder and untreated Celiac.

Have you noticed if the pain is made worse by eating high fat food?  i.e. Salami

A HIDA scan can rule out a non-functioning gallbladder.  An ultrasound will look for stones.  Non-functioning Gallbladders are a curse in my family!  I do not think surgery will be done without the HIDA or evidence of infection based an an ER visit.   Mine was removed while I was on a business trip, but that was because the ER doctor knew I had an infection, appendicitis was ruled out, but the HIDA scan confirmed my gallbladder was at 0% functionality.  

I have no concrete evidence off this, but I think that had my celiac disease been treated or caught years ago, my gallbladder could have been saved.  

[cyclinglady]

Hopefully your doctor has told you to consume gluten daily for the scope.  If you are gluten free,  there is a great chance that they will not find damage and you will be in limbo-land regarding a diagnosis.  Please research how to diagnosis celiac disease properly as many doctors get it wrong!  The University of Chicago's celiac website is a good place to start.  

What celiac tests were taken?  Often a just one is given (TTG) and it can miss some celiacs like me!  ☺️ You should keep all records of lab results.  Four to six biopsies should be taken to screen for celiac disease.  

Low iron can be a symptom of celiac disease (my ferritin level was a 2 when I was diagnosed).  My b12 is extremely high.  No, I do not have cancer and I do not supplement at all (even in processed foods).  It has been high for 20 years and my doc and I think it is just genetic.  My folate is super high too.  Same reason, I think.  

[mommida]

I went into the ER because of pain I can't even describe.  They called the surgeon, and were going to prep me for surgery.  Scared the crap out of me and I said I would go through the testing and know for sure what they were taking out before going into surgery.  Lost a lot of weight for the 2 weeks of testing.  Ultrasound, MRI, and HIDA.  HIDA is the proper test that was a conclusive diagnoses.  I ended up with the same surgeon that was on call that night too.  I really should have let them do the "exploratory" gall bladder removal that night.  (I've walked out a few times when surgery was mentioned, they will take out a gall bladder with out testing.)

[cyclinglady]

55 minutes ago, mommida said:

I went into the ER because of pain I can't even describe.  They called the surgeon, and were going to prep me for surgery.  Scared the crap out of me and I said I would go through the testing and know for sure what they were taking out before going into surgery.  Lost a lot of weight for the 2 weeks of testing.  Ultrasound, MRI, and HIDA.  HIDA is the proper test that was a conclusive diagnoses.  I ended up with the same surgeon that was on call that night too.  I really should have let them do the "exploratory" gall bladder removal that night.  (I've walked out a few times when surgery was mentioned, they will take out a gall bladder with out testing.)

I completely understand that pain!  I always passed out (not so pleasent in front of 17 colleagues in a restaurant) during my "attacks".  I just wished that I had known  about celiac disease.  I might have been able to keep my gallbladder before it rotted.   I am  thankful for the surgery though.    I would have been dead back in the olden days!  

[Lilbarista]

8 hours ago, mommida said:

Have you had your gallbladder checked?  The pain is in your lower ribs on the right side (front) and even feels like someone is stabbing you in the back?  If you go in to urgent care or emergency when the pain is bad and your stomach is extra gurgly they might just take it out that night. "off to college" you must be younger and don't fall into the common age bracket when the 4 F's are diagnostic.. Fair, Female, Fertile (still fertile but towards the end of fertile years)/Forty, some say Fat is on the list too. There is also a connection to a non-functioning gall bladder and untreated Celiac.

Have you noticed if the pain is made worse by eating high fat food?  i.e. Salami

I've had my gallbladder checked and it came back fine. I'm fair, female and 17. I haven't noticed high fatty foods bothering me. 

[Lilbarista]

7 hours ago, cyclinglady said:

Hopefully your doctor has told you to consume gluten daily for the scope.  If you are gluten free,  there is a great chance that they will not find damage and you will be in limbo-land regarding a diagnosis.  Please research how to diagnosis celiac disease properly as many doctors get it wrong!  The University of Chicago's celiac website is a good place to start.  

What celiac tests were taken?  Often a just one is given (TTG) and it can miss some celiacs like me!  ☺️ You should keep all records of lab results.  Four to six biopsies should be taken to screen for celiac disease.  

Low iron can be a symptom of celiac disease (my ferritin level was a 2 when I was diagnosed).  My b12 is extremely high.  No, I do not have cancer and I do not supplement at all (even in processed foods).  It has been high for 20 years and my doc and I think it is just genetic.  My folate is super high too.  Same reason, I think.  

They told me that since I have been exposed to gluten for so long that the damage should be noticeable.  I'm not sure of the celiac tests that were done but I do know that my ferritin was 11. My b12 I'm not sure the number. After I eat things with gluten, I get super tired and my stomach hurts so bad.  

[squirmingitch]

1 hour ago, Lilbarista said:

They told me that since I have been exposed to gluten for so long that the damage should be noticeable.  I'm not sure of the celiac tests that were done but I do know that my ferritin was 11. My b12 I'm not sure the number. After I eat things with gluten, I get super tired and my stomach hurts so bad.  

I am sorry but they are wrong. The damage is not noticeable with the naked eye unless the damage is of the most extreme kind. They may see inflammation but that can be caused by other things. The only way to dx celiac with the endoscopy is to take biopsies --- 6 to be precise and those biopsies have to be sent to pathology to tell the state of celiac damage. AND you HAVE to be actively eating gluten.

Open Original Shared Link

Unfortunately this kind of thing has happened thousands of times and the poor patient has gone through all this just to be told they do not have celiac BECAUSE the doctor didn't know what they were doing so PLEASE do as the link says.

[Lilbarista]

1 hour ago, squirmingitch said:

I am sorry but they are wrong. The damage is not noticeable with the naked eye unless the damage is of the most extreme kind. They may see inflammation but that can be caused by other things. The only way to dx celiac with the endoscopy is to take biopsies --- 6 to be precise and those biopsies have to be sent to pathology to tell the state of celiac damage. AND you HAVE to be actively eating gluten.

Open Original Shared Link

Unfortunately this kind of thing has happened thousands of times and the poor patient has gone through all this just to be told they do not have celiac BECAUSE the doctor didn't know what they were doing so PLEASE do as the link says.

Thanks for letting me know. I'll stop the diet and start eating gluten again. I'll just take the probiotics to help with the stomach pains. 

[squirmingitch]

I know it's hard. That's the killer with this dx business. We have to hurt ourselves to get the dx. Sigh. Hang in there a little while longer. {{{HUGS}}}