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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am finding that a multidisciplinary approach, well, pretend as if, celiacs, IBS, diverticulous, lactose intolerance or maybe just don't get along, small amounts, add fiber, start slow, veggies, metamucil, chew well and slowly, or use a blender, watch spicey foods, booze is, well, a small glass of wine might actually help to relax the muscles, but dang it, I can't JUST drink a small glass of wine, so booze is out, sleep at a slant, take the PPI pills regularly, etc. learn to relax more, worry less, excercise, walking, swimming, and/or...tai chi, martial arts, yoga, whatever, get that gut moving, but take it easy, stay away from assholes, jerks and perps, and things seem to get better. One more thing, if your doctor don't listen to you and hear what you are saying, find another doctor, read their reviews and ratings, as skillsets and abilities, vary widely, good cops, bad cops, bad lawyers, maybe good? and same with doctors.

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@dragonfly123

am finding that a multidisciplinary approach, well, pretend as if, celiacs, IBS, diverticulous, lactose intolerance or maybe just don't get along, small amounts, add fiber, start slow, veggies, metamucil, chew well and slowly, or use a blender, watch spicey foods, booze is, well, a small glass of wine might actually help to relax the muscles, but dang it, I can't JUST drink a small glass of wine, so booze is out, sleep at a slant, take the PPI pills regularly, etc. learn to relax more, worry less, excercise, walking, swimming, and/or...tai chi, martial arts, yoga, whatever, get that gut moving, but take it easy, stay away from assholes, jerks and perps, and things seem to get better. One more thing, if your doctor don't listen to you and hear what you are saying, find another doctor, read their reviews and ratings, as skillsets and abilities, vary widely, good cops, bad cops, bad lawyers, maybe good? and same with doctors.

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and peptobismol...is my friend, then probiotics to change the bacterial balance back to normal

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@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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I am not a doctor, but from my reading, Celiacs, is not always clear cut and dried...try cutting out wheat/gluten and see what happens. My blood test was high, but the small lab sample he took out of my gut, did not show the celiac "sprue" whatever them things are, but they are only "sprue" if you are eating wheat and I stopped. I also found that milk, occasionally, but not always, so I'm cutting out both lactose and adding lactaid enzyme along with the antibiotics. I wish you the very best, it's amazing how diverse and complicated the GI system is, and well, we never knew, kinda ignored it, and now, OMG, it says, "wake up and pay attention to me" okay!

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well, I had been prescribed linzess by two GI docs, one at like three hundred mcg, one at one fifty mcg, I took the one fifties, and well, seemed to work too well, hershey squirts so I stopped, was going much better, fairly well, but now I just read that it takes up to a week to work, and a week for the symptoms to return....so well, back on the linzess for now, but curious if they have a 75 mcg?

well, should I say "holy crap" LOL (o:

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Have you had a test for H. Plylori?

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@joha, the GI symptoms you are enduring may have a basis in a deficiency of vitamin B1. Vitamin B1 (thiamine) needs adequate magnesium to become bioactive as does vitamin D. Activated thiamine in turn is needed to activate vitamin B6. The B vitamins work better together. Thiamine can be diminished or destroyed by heat from long cooking times and by anti thiamine factors listed in the stuttersence link. Deficiencies may not respond to low levels of supplemental thiamine and instead require higher levels as explained in the third eonutrition link. The first two links offer information on thiamine's role in the gut the last link is a overview of thiamine. Always consult your health care professional before using any supplement.

https://www.eonutrition.co.uk/post/when-sibo-ibs-constipation-are-just-unrecognized-thiamine-deficiency
https://www.eonutrition.co.uk/post/thiamine-deficiency-a-major-cause-of-sibo
http://stuttersense.blogspot.com/2014/08/these-factors-reduce-your-thiamine.html
https://www.eonutrition.co.uk/post/mega-dose-thiamine-beyond-addressing-deficiency
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

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@onamission

@joha, the GI symptoms you are enduring may have a basis in a deficiency of vitamin B1. Vitamin B1 (thiamine) needs adequate magnesium to become bioactive as does vitamin D. Activated thiamine in turn is needed to activate vitamin B6. The B vitamins work better together. Thiamine can be diminished or destroyed by heat from long cooking times and by anti thiamine factors listed in the stuttersence link. Deficiencies may not respond to low levels of supplemental thiamine and instead require higher levels as explained in the third eonutrition link. The first two links offer information on thiamine's role in the gut the last link is a overview of thiamine. Always consult your health care professional before using any supplement.

https://www.eonutrition.co.uk/post/when-sibo-ibs-constipation-are-just-unrecognized-thiamine-deficiency
https://www.eonutrition.co.uk/post/thiamine-deficiency-a-major-cause-of-sibo
http://stuttersense.blogspot.com/2014/08/these-factors-reduce-your-thiamine.html
https://www.eonutrition.co.uk/post/mega-dose-thiamine-beyond-addressing-deficiency
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

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Amazing! Your brilliant! During my hospital stay no proper diagnosis was made however they gave me a very high dose of vitamin B which I am still taking and seems to be helping. In addition they discovered that my cortisol level was very low which also contributes to these symptoms. They gave me an injection with some and currently waiting to see if my body has accepted it. Many Thanks!

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Have you tested for Celiac. It has all those symptoms and 100 more. You small intestine is damaged and you do not digest food. Plus other parts of the body can be ruined, like osteoporosis.

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My name is Shimon Ron
I have some of your symptom After Colonoscopy 1.5 Yrs ago. What's Bother me is the weakness,
and the feeling to go to the bathroom all the time and I have to push so hard that you can get
heart attack and more. My Doctor suggested to go to Mayo Clinic for "Capsule endoscopy Camera". It's a wireless camera that take pictures of your digestive tract. maybe they will find the problem that we have .

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@pwgrimes

Have you tested for Celiac. It has all those symptoms and 100 more. You small intestine is damaged and you do not digest food. Plus other parts of the body can be ruined, like osteoporosis.

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yes tested for it and thankfully came back negative

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