No diagnosis but have had difficult 5 years of GI issues

Posted by genise22 @genise22, Oct 1, 2023

I started having Gastrointestinal issues in 2018 out of nowhere. I was a healthy kid and up to that point a healthy teenager. I had no issues with different foods and my food options consisted of a variety of foods with no restrictions. My parents loved to cook so we rarely ate out or had processed foods. But in 2018 that all changed and I started experiencing severe abdominal pain and bloating after eating food along with constipation. My bloating was so painful I looked 5 months pregnant and it normally would occur within 30 minutes to an hour. I have seen 3 gastroenterologists (2 pediatric gastroenterologists and 1 adult gastroenterologist) and have had a colonoscopy, endoscopy, been tested for celiac disease, SIBO, and had negative exams for Crohns and ulcerative colitis, I’ve had a lot of blood work, CT scans and X-rays (to monitor constipation) and everything has come back normal or negative. I’ve eliminated dairy and have maintained a FODMAP diet for two years now because dairy and FODMAP foods make it worse but even “safe foods” from the low FODMAP diet are still causing abdominal pain. It’s almost as if my stomach is just sensitive to food all of a sudden and it struggles to digest it. I am at a loss as to what is going on with my gastrointestinal system and after 5 years of dealing with this and being so restricted with food it’s starting to affect my mental well-being because I have no answers and no relief. The only symptom I have been able to “fix” is the constipation but unfortunately because I’m taking Motegrity for it. If anyone knows something that can help or can help guide me. I just want to be normal again and be pain free. I’m desperate for answers.

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@airey2

I too had gi issues undiagnosed for 27yrs, accompanied with severe abdominal pain. Finally at age 49(things started age 22), I went to a gynecologist and he discovered a large ovarian cyst that turned out to be endometriosis. It was everywhere, including on my intestines and bladder. That was why I was having problems. At same time it was discovered that I am gluten sensitive (common with endometriosis). Have you tried a gynecologist?

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Do you mind me asking what your symptoms were? My daughter(25 years old) has been struggling with GI issues (vomiting and pain) that seems to come on every 3-4 weeks. Endometriosis has come to my attention.

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@rozy288

I feel for you !! I have 6-7 diagnoses.. just saw my 6 th Gastro doctor in 10 years. Even had major testing at Mayo Clinic 2 yrs ago .
I’ve tried and done everything RX , Holistic, Diet wise , Ecery supplement for digestive health , hypno therapy, Acupuncture, Massage Therapy. I deep wet belch over 1000 x a day and half the night. Non stop churning gut . Hate to eat food 🥘, and eat small and healthy. It’s a living nightmare. 10 years of my life gone .
This new Gastro wants to put me on Remeron low dose ( I’ve tried some other antidepressants w/ no luck or bad side effects). This is specific for sleep and helps w/ digestive issues she said .
I’m hesitant to try again as I have such day fatigue as it is and deal w/ symptoms all day , everyday.
I’m going yo try it though .
I’ve had over 20 tests done ☑️ too .
Same diagnosis 7 of them . She said it’s more like functional dysplasia. That the gastritis, GERD , hiatal hernia , diverticulosis , shazki ring , small gastrointestinal polyps etc .. are not causing this . Hummmm I don’t believe that ?
We are at the mercy of these Dr’s
I am seeing a néw Functional medical Dr too and hope he can help me too .
God Bless you as this journey is so hard . I’ll pray 🙏 hard you find someone to help you !

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Hi, I had my gallbladder removed in 2019 with all the same symptoms and no relief. Sounds exactly like me, It is nonstop sickness and drs do not fully understand. I did a lot of research and found that there are some tests that need to be done that most insurance companies approve but the facility that does the test hence the mayo clinic and a few others are not provided under my insurance. I believe we are both suffering from the same thing. BILE REFLUX GASTERITIS W/post cholecystectomy SYNDROME. BAM and BAD With BRG. Here is a link you can read interesting article ncbi.nlm.nih.gov/pmc/articles/PMC9484982/. and you can always look it up on the Mayo clinic. identifying-diarrhea-caused-by-bile-acid-malabsorption/mac-20430098. Hope this helps. Still no cure as much research as i have done and still no GI specialist can help at all. My life is pretty much over as well. Hermit and isolation at its finest. Good luck.

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@jean64

Do you mind me asking what your symptoms were? My daughter(25 years old) has been struggling with GI issues (vomiting and pain) that seems to come on every 3-4 weeks. Endometriosis has come to my attention.

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endometriosis is associated with a woman's monthly cycle. depending on where it is located determines the symptoms (it can be anywhere, but most common is the pelvic area). I had extreme constipation requiring laxatives on a regular basis, then diarrhea during cycle, extreme pelvic pain which pain killers did not stop, strong headaches, very heavy bleeding sometimes out of control. The all pain and bleeding got worse as i got older.
Then it seemed like food of anykind made me sick, even bland foods. often i could only stand a few bites before feeling nauseated. Mild exercise helped some (if i was not in too much pain). Salty foods seemed to help with the nausea. since endometriosis was also on bladder, it hurt just before having to pee, but emptying bladder helped. i had a large ovarian cyst made up of endometriosis. it was pressing on bladder and intestines, and was reason for all the symptoms. It is fed by estrogen, and i learned the hard way what foods made it worse. Do not eat flaxseed as they are very high in natural estrogen. My dr put me on a low fiber diet due to it being on my intestines, and to cook fruits and veggies as all plants have some estrogen in them and cooking helps kill it. also no food with added hormones.

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@mvalles702

Hi, I had my gallbladder removed in 2019 with all the same symptoms and no relief. Sounds exactly like me, It is nonstop sickness and drs do not fully understand. I did a lot of research and found that there are some tests that need to be done that most insurance companies approve but the facility that does the test hence the mayo clinic and a few others are not provided under my insurance. I believe we are both suffering from the same thing. BILE REFLUX GASTERITIS W/post cholecystectomy SYNDROME. BAM and BAD With BRG. Here is a link you can read interesting article ncbi.nlm.nih.gov/pmc/articles/PMC9484982/. and you can always look it up on the Mayo clinic. identifying-diarrhea-caused-by-bile-acid-malabsorption/mac-20430098. Hope this helps. Still no cure as much research as i have done and still no GI specialist can help at all. My life is pretty much over as well. Hermit and isolation at its finest. Good luck.

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Thank you for the info . I read all of it .
I did the endoscopy w/ endo flip for PH at Mayo , The Entroscopy there and long 2 hr SIBO test .
I tried Creon for pancreatic/bile reflux and it didn’t work .
I’ve tried everything.
I’m now on lose dose Remeron to try by new Gastro in Orlando .
I don’t know ? It sucks so much .
I have many diagnoses.
I’m also seeing a new FM Dr.
So we did a bunch of tests and bloodwork and will have a treatment plan done ☑️ soon .
I keep trying ….
It’s the 1000’s deep wet belches that are horrible daily and nightly, then the pvcs kick up .
Sleep is bad .
I feel for anyone going through this . Pray 🙏

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@mvalles702

Hi, I had my gallbladder removed in 2019 with all the same symptoms and no relief. Sounds exactly like me, It is nonstop sickness and drs do not fully understand. I did a lot of research and found that there are some tests that need to be done that most insurance companies approve but the facility that does the test hence the mayo clinic and a few others are not provided under my insurance. I believe we are both suffering from the same thing. BILE REFLUX GASTERITIS W/post cholecystectomy SYNDROME. BAM and BAD With BRG. Here is a link you can read interesting article ncbi.nlm.nih.gov/pmc/articles/PMC9484982/. and you can always look it up on the Mayo clinic. identifying-diarrhea-caused-by-bile-acid-malabsorption/mac-20430098. Hope this helps. Still no cure as much research as i have done and still no GI specialist can help at all. My life is pretty much over as well. Hermit and isolation at its finest. Good luck.

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Also tried the first medication for bile reflux gastric issues but not the second (and Creon rx google it ).
None worked.

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