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4 Years Of Undiagnosed Abdominal Pain

inmommyheaven

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inmommyheaven Newbie
inmommyheaven
Posted

I am at my wits end. I have had upper abdominal pain for the past four years and have yet to find relief. The first time I went to the doctor, he diagnosed me with reflux and tried all the meds for it. Nothing worked and I gave up. About 6 months ago I started having difficulty swallowing so I went back in. She agreed that it could be reflux and sent me for an endoscopy. It showed irritation and narrowing of my esophagus which "confirmed" reflux. So I have been on reflux meds for 6 months but the pain is still there. I have since had ultrasounds, CT scans, a HIDA scan (which showed a delay in the bile traveling to me bowels) so I had an ERCP and manometry as a follow up to that. That came back normal so they figure the delay was a fluke. I am completely frustrated. The pain isn't unbearable. Most of the time it is just a constant dull ache between my belly button and sternum but at times can be crippling. My friend mentioned celiac as she was just diagnosed with it. I talked to the doctor about it and they said my endoscopy would have showed irritation to my intestines if I had celiac. I have so many of the symptoms. Abdominal pain, bloating, bruising easily, fatigue, depression, dentist said I have very soft teeth, tingling in my limbs, etc. Do you guys have any other suggestions for me. I scheduled an appt with allergy/immunology but can't get in until December.

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twe0708 Community Regular
twe0708
Posted
I am at my wits end. I have had upper abdominal pain for the past four years and have yet to find relief. The first time I went to the doctor, he diagnosed me with reflux and tried all the meds for it. Nothing worked and I gave up. About 6 months ago I started having difficulty swallowing so I went back in. She agreed that it could be reflux and sent me for an endoscopy. It showed irritation and narrowing of my esophagus which "confirmed" reflux. So I have been on reflux meds for 6 months but the pain is still there. I have since had ultrasounds, CT scans, a HIDA scan (which showed a delay in the bile traveling to me bowels) so I had an ERCP and manometry as a follow up to that. That came back normal so they figure the delay was a fluke. I am completely frustrated. The pain isn't unbearable. Most of the time it is just a constant dull ache between my belly button and sternum but at times can be crippling. My friend mentioned celiac as she was just diagnosed with it. I talked to the doctor about it and they said my endoscopy would have showed irritation to my intestines if I had celiac. I have so many of the symptoms. Abdominal pain, bloating, bruising easily, fatigue, depression, dentist said I have very soft teeth, tingling in my limbs, etc. Do you guys have any other suggestions for me. I scheduled an appt with allergy/immunology but can't get in until December.

That's horrible! You can try a gluten free diet and see if that helps. I noticed a difference within a few day with bloating! I don't mean to scare you but one of my husbands friends had pain in his stomach and esophagus area and went in for a biospy which came back fine. They did many other tests on him and still couldn't figure it out. Finally he got to a point where he couldn't keep food down and the docs went back in and did another biopsy and that came back positive for cancer. Do you have any problems keeping food down? Your symptoms do sound more like Celiac and those are the sypmtoms I had. About three weeks before I was diagnosed I was at a dentist who asked me if I had a problem with acid reflux and I had said "not that I know of." Turns out I did and it was part of my Celiac problem. Good luck and hope you feel better soon!

inmommyheaven Newbie
inmommyheaven
Posted
  • Author
That's horrible! You can try a gluten free diet and see if that helps. I noticed a difference within a few day with bloating! I don't mean to scare you but one of my husbands friends had pain in his stomach and esophagus area and went in for a biospy which came back fine. They did many other tests on him and still couldn't figure it out. Finally he got to a point where he couldn't keep food down and the docs went back in and did another biopsy and that came back positive for cancer. Do you have any problems keeping food down? Your symptoms do sound more like Celiac and those are the sypmtoms I had. About three weeks before I was diagnosed I was at a dentist who asked me if I had a problem with acid reflux and I had said "not that I know of." Turns out I did and it was part of my Celiac problem. Good luck and hope you feel better soon!

I keep food down fine. The only problem I had was when I had the difficulty swallowing. I would go to swallow food and then couldn't so I would have to bring it back up. Lovely. They dialated my esophagus and that has helped. Thanks for your input.

GottaSki Mentor
GottaSki
Posted

Your symptoms could be Celiac. I would start with blood tests, although blood tests along with biopsy often are negative in people with gluten intolerance or Celiac Disease.

Option #1 - Try to find a Gastroenterologist that is experienced/interested in Celiac cases. I you go this route continue eating gluten until testing is complete.

Option #2 - Go gluten-free to see if your symptoms improve- this needs to be 100% gluten-free.

Good Luck!

Hope you feel better soon.

ang1e0251 Contributor
ang1e0251
Posted

I see your dr said that celiac disease would have showed up in your endoscopy. It's not always noticed with the naked eye, that's why they take multiple biopsies. Did they take biopsies of the small intestine? Or did they stop at the stomach? Ask for a copy of all your tests. There are different ways to interpret them. Some dr's take some interpretations that look mild as a negative. You might not agree with that. Better to see the test for yourself.

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