1. < Digestive Health

Severe GI symptoms, as yet unconfirmed diagnosis: Ideas of next steps?

Posted by joha @joha, May 31, 2022

Im wondering if anyone can help me. For close to a year now I've been suffering immensely, with abdominal pain, severe weakness, vomiting, appetite loss, weight loss, spasms, alternating constipation and dighreah. Initially my Doctors thought we were talking about IBD, but after having MRI scans, Ultrasounds, Colonoscopy, Gastroscopy that doesn't seem to be the case. Therefore I have been diagnosed with IBS even though the doctor doesn't actually believe its that. Nothing for the symptoms has helped. I am currently awaiting a Pillcam test. In the meantime I am totally at loss

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joha | @joha | Jun 7, 2022
In reply to @grace29 "I’ve noticed after all the standard testing is complete and they can’t find anything they write..." + (show)
@grace29

I’ve noticed after all the standard testing is complete and they can’t find anything they write you off as ibs

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Yes I've heard that from a few people...

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pookey | @pookey | Jun 8, 2022
In reply to @colleenyoung "@joha, finding answers for GI symptoms can be challenging. You find from the posts in these..." + (show)
@colleenyoung

@joha, finding answers for GI symptoms can be challenging. You find from the posts in these related discussions that you're not alone:
- Not so sure it's IBS by @katiek78 https://connect.mayoclinic.org/discussion/not-so-sure-its-ibs/
- Mystery abdominal pain by @lookingforanswers2022 https://connect.mayoclinic.org/discussion/mystery-abdominal-pain/

Do you find certain foods or activities help or trigger the symptoms? Do you track your symptoms and possible triggers?

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Try eating gluten free. It works for me.

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riflemanz64 | @riflemanz64 | Jun 8, 2022
In reply to @noelles "The Pillcam gave me the diagnosis. The camera reached a point in the intestine where it..." + (show)
@noelles

The Pillcam gave me the diagnosis. The camera reached a point in the intestine where it would not pass through. Adhesions were present from a previous intestinal perforation due to Motrin. It has helped to understand the issue.

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I also had Motrin burn a hole in my small intestine.

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sage50 | @sage50 | Jun 11, 2022

I had many of your symptoms, including gas all the time, bloating. I also developed a ton of body aches in just a 2 year period, which turned out to be arthritis through my whole body at 52. It was from malnutrition. My Dr's are trying to say it's chrohns disease...but I started to look into Celiac Disease , and the symptoms are the same.
This past week I have gone on a multi strain probiotic with a high cfu count...and have cut out sugar, and am working on gluten free diet. I am already starting to feel relief from the pain. Celiac runs in families, so it might help to look into if any relatives have it.
I'm not diagnosing you, just sharing from experience. My Dr is sending me an rx for an antinflammitory that has all these dangerous warnings. That motivated me to educate myself than get liver failure.
Peace to you, never give up, take care of yourself to your best to recover,.....there is always a pathway to the other side...education is the key, and hope. Love.

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2 replies
joha | @joha | Jun 12, 2022
In reply to @sage50 "I had many of your symptoms, including gas all the time, bloating. I also developed a..." + (show)
@sage50

I had many of your symptoms, including gas all the time, bloating. I also developed a ton of body aches in just a 2 year period, which turned out to be arthritis through my whole body at 52. It was from malnutrition. My Dr's are trying to say it's chrohns disease...but I started to look into Celiac Disease , and the symptoms are the same.
This past week I have gone on a multi strain probiotic with a high cfu count...and have cut out sugar, and am working on gluten free diet. I am already starting to feel relief from the pain. Celiac runs in families, so it might help to look into if any relatives have it.
I'm not diagnosing you, just sharing from experience. My Dr is sending me an rx for an antinflammitory that has all these dangerous warnings. That motivated me to educate myself than get liver failure.
Peace to you, never give up, take care of yourself to your best to recover,.....there is always a pathway to the other side...education is the key, and hope. Love.

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Many Thanks for your wishes. I was tested for celiac and the Dr says its not that. I am to be admitted into hospital any day now due to weight loss and nausea and also to speed up investigations...

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2 replies
sage50 | @sage50 | Jun 12, 2022
In reply to @joha "Many Thanks for your wishes. I was tested for celiac and the Dr says its not..." + (show)
@joha

Many Thanks for your wishes. I was tested for celiac and the Dr says its not that. I am to be admitted into hospital any day now due to weight loss and nausea and also to speed up investigations...

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Sorry to hear about hospital . Hopefully they find answers. Excuse my going on about celiac...just trying to help out.
I wish you better health. Never give up...the miracle could be right around the corner.
Peace. Audrey.

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1 reply
joha | @joha | Jun 12, 2022
In reply to @sage50 "Sorry to hear about hospital . Hopefully they find answers. Excuse my going on about celiac...just..." + (show)
@sage50

Sorry to hear about hospital . Hopefully they find answers. Excuse my going on about celiac...just trying to help out.
I wish you better health. Never give up...the miracle could be right around the corner.
Peace. Audrey.

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Thanks alot! I appreciate it

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tracyfurtiscaudle | @tracyfurtiscaudle | Jun 13, 2022
In reply to @joha "Yes, Definitely! Spicy, and fatty foods as well as high fiber foods trigger symptoms. My consultant..." + (show)
@joha

Yes, Definitely! Spicy, and fatty foods as well as high fiber foods trigger symptoms. My consultant though prescribed me some fiber powder because of my constipation. As He seems not to cate too much about me and I'm throwing up practically everything I eat (I've lost about 19 kg) I'm moving on to a different specialist. I would like to come to mayo but I live in the UK...
After checking up what loriwho suggested it definitely seems like gastroparesis!

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Similar situation. Learned I have a histamine intolerance- severe. I take DAO enzyme natural supplements before eating. Also, eating Gluten-free a must. Check out low histamine diet & gluten free diet. Best to you.

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dragonfly123 | @dragonfly123 | Jun 13, 2022

good luck, you mentioned that the doc said no to celiacs? my blood test came back high percentage probable, but I quit wheat, so my celiac sprue, sample in the endoscopy came back negative, but I don't care, cutting wheat/gluten helped a lot, and I was in very bad shape, I'm sure that there's more, think the nissen fundo went south, about three weeks post surgery, but that has yet to be determined..

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