No diagnosis but have had difficult 5 years of GI issues

Posted by genise22 @genise22, Oct 1 9:17pm

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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Hello @genise22 and welcome to the Digestive Health support group on Mayo Connect. It certainly sounds like you are having a lot of digestive issues without an understanding of their cause. I can only imagine how frustrating that must be for you. You don't specifically mention your age, but I'm assuming from what you have said that you might still be a teenager. Is that correct?

It sounds as if you have tried many different eating plans but have not found one that solves this problem. I admire how proactive you have been in trying to find an answer to this problem. I would like to invite another mentor to this discussion, @astaingegerdm, who has also had some very hard to diagnose digestive tract issues. Perhaps she can shed some light on your problems.


@genise22, I'd like to add my welcome to @hopeful33250's. You mentioned you have seen a variety of different providers and had some tests done as well including Celiac and SIBO. Have you had any other allergy or food tests done to rule out specific foods? Have you found any foods at all that don't trigger this reaction?


Since you didn't say otherwise, might it be safe to assume that you are okay with your weight? Has all of this led to extreme weight loss or malnutrition?


Your case sounds like mine as most low FODMAP foods cause me problems. My staples are trace or zero FODMAP foods.

See attached.

Shared files

My IBS routine 10022023 (My-IBS-routine-10022023.pdf)


Have you had any abdominal surgeries including c-section. If so you may have adhesions that causes all of your issues.


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 !


I have IBS and have since birth, but I’ve had horrible experiences with my gut since forever.
There is a book called The Bloated Belly Whisperer by Tamara Duker Freuman. It’s on Amazon for $15.99. It helped me sort out my bloat, some pain and such. There is a test to help determine what plagues you. I kept reading down through my results until I got to the one that fit the best.
I finally felt heard and not alone.
Then I saw my Mayo gastro and she pretty much confirmed what the book said it could be. 🙂
I appreciated the help. Now I have a base and can work from there.


Hi, it's amazing that I have had the exact same situation going on since Thanksgiving Day 2018. Been diagnosed with IBSC. All kinds of tests, scans, colonoscopy, endoscopy… You name it. My issues are slow digestion, constipation, pain, and bloating. Been on 290 much. Linzess; doesn't work, Amitiza; doesn't work, so I alternate my laxatives. M.O.M. one day, Magnesium Citrate, Dulcolax tablets and suppositories. But it takes twice as long to work ( up to 16 hours), and I take double or triple the recommended dose. It's affecting my life and mental well-being.


@genise22 Hi! Teresa is correct saying I have had some tough to diagnose GI issues.
I’m sorry you start having them so young.
Did you say that you have been tested for gallbladder disease? That was my first problem. I didn’t even suspect that- I thought I had gastritis. Gallbladder is gone but I still have to be very careful eating fats.
The majority of problems started 15 years ago. First collagenous colitis- autoimmune never ending diarrhea. Disappeared after immune suppressant treatment.
I then started to have severe pain, most often after eating.
I had realized along the way that I had IBS-C. Bloating has been severe as well as cramps and scattered pain.
I was seen and tested at Mayo for a few years before 2 rare diagnoses were found.
One was MALS- Median Arcuate Ligament Syndrome.
There is a ligament originating on the diaphragm that puts pressure on the celiac artery. The celiac artery supplies blood to many of the abdominal organs. It typically shows itself as at times excruciating pain 15-30 minutes after eating. I had this pain for many years before it was diagnosed and surgically corrected by cutting the ligament. End of pain.
My other rare problem would not apply to you- a type of autoimmune intestinal illness caused by intestines being damaged from chemo.
You may want to bring up MALS- you have had many scans etc. but it may not have seen this problem.
It is diagnosed with abdominal Doppler ultrasound or abdominal CT angiogram. There could also be other abdominal arteries with similar problems.
Bloating goes with everything!
Did they test you for delayed gastric emptying?


I'm so sorry to hear about your plight, and at such a young age. I'm a 69 y/o male and have been struggling with constipation for the last year – but I'm old and this is not unusual. But a few ideas for you:

1. You went from eating very healthy at home to join the world of (largely) processed foods. Your body simply didn't know how to handle it. That doesn't explain the five-year duration. So rather than try to follow exotic diets, maybe go back to what your diet looked like at home?

2. To help my digestion and limit the severity of constipation, and to lose some fat and feel better in the gym, I have drastically cut down on refined sugars, primarily regular coke (loaded with sugar). Even so-called healthy drinks like Vitamin Water can be loaded with sugar as can dried fruit like raisins. So take a close look at how much refined sugar you eat (it hides well) and cut down. Treat yourself, but cut down. And sugar increases inflammation and I believe you will just feel better and more clear-headed.

3. Keep it simple. Make it a point to eat some raw fruits each day and some raw vegetables each day, nothing fancy (I love raw baby carrots and raw sweet peas still in the pod). If you like cereal, change to muesli and add some plain, non-sweetened greek yogurt for protein and healthy fat and milk if you like. To sweeten, add just a LITTLE of a sweetened cereal like Raisin Bran or honey nut Cheerios.

4. Do at least 3 or 4 sessions of cardio at the gym each week – stationary bike, rowing machine, treadmill or elliptical trainer. I love using a rowing machine because it works 80% of the body and gets your knees up above your waist, helping peristaltic motion and easing constipation. If you run, running really kickstarts the intestines to move in some people.

I know there is nothing exciting or exotic or new about these recommendations. I do them and they work well. Finally, if constipation remains a problem, Miralax should make your Motegrity more effective.

I hope this helps. GI issues are just no fun. Stick with it, and all the best.

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