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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Without a diagnosis it's hard. Before a gastro gave me my diagnosis my hematologist recommended going gluten free and dairy free and it helped I also did the brat diet but added chicken and eggs I wish you the best.
My GP gave me meds for colitis and that also helped
Don't give up on yourself the fight is worth it

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@ealeonard1214

Without a diagnosis it's hard. Before a gastro gave me my diagnosis my hematologist recommended going gluten free and dairy free and it helped I also did the brat diet but added chicken and eggs I wish you the best.
My GP gave me meds for colitis and that also helped
Don't give up on yourself the fight is worth it

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Try pepcid complete for the acid in your stomach and take a multivitamin I get a b-12 once a month and I take vitamin d-2 prescription also calcium and for anxiety you should get something made me feel better

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Has your pancreas been checked?

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Look into candidiasis. Most doctors don’t know what it is. Have to go to alternative medicine doc. We

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I feel the same way. Nausea for years and have had every test known to mankind. Stinks and don't know what to do anymore!

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What causes sludge in ball bladder?

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@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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I think you are on the right path. Something to consider, an aggressive form of SIBO may appear as if you have Celiac disease ( from a study I read, Dr G Mullin, Johns Hopkins 2014, SIBO).
A book, SuperGut, by Dr Davis is also a great resource. Good luck.

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The GI is complicated, there could be overlapping, I"d start by cutting out lactose, wheat, garlic, onion, fatty foods, beans, go to a fodmap type, diet. Pepto bismo, has helped me, doc put me on linzess, but even opening and an erasers worth can give me the trots, but does help, when I'm desperate, rather than magnesium citrate, EXCERCISE!, walking, swimming, and/or, cut lower stress, or stressors, sometimes I can just lay down and relax various areas and slowly things will "gurgle" and the gas, food, will move where it was stuck before, gas X simethicone, glycol/powder, metamucil but smaller amounts, especially at first, just remember like they say in some recovery programs, "progress not perfection" NA basic text says, "we didn't become addicted in one day so remember easy does it." The GI, and it's problems, are kinda like diabetes, once ya got it, it's management, not "get over it" take care of yourself, and work on progress, and your days should get better, after a year, mine did and still are.

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@david2022

I think you are on the right path. Something to consider, an aggressive form of SIBO may appear as if you have Celiac disease ( from a study I read, Dr G Mullin, Johns Hopkins 2014, SIBO).
A book, SuperGut, by Dr Davis is also a great resource. Good luck.

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I am very grateful for the advice.
May I ask, what is SIBO?
I dont know 2 much on this whole gastro area....my crohns was asymptomatic when they found it 5 yrs ago on my scope. My symptoms have appeared, quite fiercely, in the past 4 months, as I'm in an abusive marriage, and the stress is killing me, literally. I can feel the pain go to a 10 immediately when I'm being yelled at.
The situation is hard,as I'm locking myself in a room with my dog. It's my meditation room I created yrs ago b4 she showed up...TG for foresight!!!
Need to talk 2 someone at night...might free up some of the stress.
Ty ty. Audrey.

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@ealeonard1214

Without a diagnosis it's hard. Before a gastro gave me my diagnosis my hematologist recommended going gluten free and dairy free and it helped I also did the brat diet but added chicken and eggs I wish you the best.
My GP gave me meds for colitis and that also helped
Don't give up on yourself the fight is worth it

Jump to this post

This is totally what helped me. I follow a Low FodMap diet now.

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