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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As a lay person having GI issues for many years, I Can only offer my attempts to help. I recently have understood that anxiety does play a part in constipation, so look into that, as I am doing now. I can't imagine, after all those tests and examinations that there is still no diagnosis/prognosis But at the same time, with my experience(s) I understand and believe you. Recently I have turned to....believe it or not: liquid AloeVera. I'm still trying this out, but I can tell you that using it as directed, I am less constipated. Now, as for me, I only stay with one "fix" for about a weeks time, then, for example, I am now using prunes/heated prune juice...for only a weeks time. I fear using anything consistently, the body becomes immune and no longer reacts to that particular aid. But that's just me. Your experience(s) leads me to confirm that the medical people are still in the realm of medicine being an ART, not a SCIENCE. I say that with respect to the industry because our bodies are very complex. So, ANXIETY, and other supplements are my current battle. Booze, drugs will only make life far worse than our GI. I am also taking CHAMOMILLE capsules to relax the gut, Beano, Fodmap, Miralax..etc
DONT help. One more thing is simethecone pills. Again, whatever I take is in MODERATION. There just isn't a "magic bullet". Perhaps over the years, we have depleted the "good bacteria" in our gut, trying to rebuild it isn't easy. Best of luck to you. PS: WALKING after eating seems to help.

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Update: put my hopes in Mayo Clinic waited a week for their call only to say they don’t take my insurance and want 5k up front 😔 I’m so exhausted mentally and physically from all this I’ll have to learn to live like this I guess

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Have you tried Atrantil?
Also probiotics and kiwi fruit. I try to eat raisin bran every morning.

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@gennaro629n90277

As a lay person having GI issues for many years, I Can only offer my attempts to help. I recently have understood that anxiety does play a part in constipation, so look into that, as I am doing now. I can't imagine, after all those tests and examinations that there is still no diagnosis/prognosis But at the same time, with my experience(s) I understand and believe you. Recently I have turned to....believe it or not: liquid AloeVera. I'm still trying this out, but I can tell you that using it as directed, I am less constipated. Now, as for me, I only stay with one "fix" for about a weeks time, then, for example, I am now using prunes/heated prune juice...for only a weeks time. I fear using anything consistently, the body becomes immune and no longer reacts to that particular aid. But that's just me. Your experience(s) leads me to confirm that the medical people are still in the realm of medicine being an ART, not a SCIENCE. I say that with respect to the industry because our bodies are very complex. So, ANXIETY, and other supplements are my current battle. Booze, drugs will only make life far worse than our GI. I am also taking CHAMOMILLE capsules to relax the gut, Beano, Fodmap, Miralax..etc
DONT help. One more thing is simethecone pills. Again, whatever I take is in MODERATION. There just isn't a "magic bullet". Perhaps over the years, we have depleted the "good bacteria" in our gut, trying to rebuild it isn't easy. Best of luck to you. PS: WALKING after eating seems to help.

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Thank you I appreciate your responses. I will look into the items you mentioned.

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@marieb23

Update: put my hopes in Mayo Clinic waited a week for their call only to say they don’t take my insurance and want 5k up front 😔 I’m so exhausted mentally and physically from all this I’ll have to learn to live like this I guess

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I’m sorry to hear that, it really is a struggle and when you don’t feel well it’s even harder to manage normal life.

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@genise22

I’m sorry to hear that, it really is a struggle and when you don’t feel well it’s even harder to manage normal life.

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Medical profession is trying to find an effective "cure" to some GI ailments, but the reality that must be understood that there is NO
SILVER BULLET! If we GI sufferers allow our discomfort to devolve into serious EMOTIONAL issues, then it hurts oneself and the cause to find solutions. Individually we must, as I am doing, evaluate my eating/drinking/ social actions. I gave up smoking 40 years ago, (I miss smoking cigars), never drank much, and still do moderate exercise. Unfortunately, there are some in the HEALTH field that are offering help with GI problems, but windup just selling products for profit, and are useless. Our grocery stores stock natural products ( prunejuice, jarred prunes,Watermelon, pineapple juice,herbal teas, (chamomille, senna) probiotics, prebiotic, fresh fruits vegetables, Aloe Vera, Kefir, and more that I am trying to some success. But all in moderation.
Don't waste money on HEALTH GURU'S, ....the cures will come someday. Meanwhile, look at YOURSELF, I am trying to stay with following what In NEED, as opposed to what I WANT. I am eliminating much of my WANTS.Lets give thanks to MAYO Clinic for allowing this public exchange on the GI issue....many Dr's don't approve of this, they accuse us of playing DR. Yet, seems like they don't have any better solutions that we, individually, may be working with. I am cautious about finding powerful relief from some "hard" medications, that only bring on other, more hurtful, side effects. Stay the course fellow GI sufferers. From a young 87 year old "dude"

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@genise22

Thank you I appreciate your responses. I will look into the items you mentioned.

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I was having terrible issues. I did not realize how much my vitamin C and magnesium supplements were wrecking havoc on my body until I stopped taking them. I have been on a bland diet bananas, applesauce, rice and protien drinks for 3 months. As it started with a bought of depression and stomach issues in June. Prayer abd walking helped alot, but food and diet definitely play a big factor in living a healthy, happy life. I have a new founded compassion for those suffering with depression and want to do what I can to help.

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@gennaro629n90277

Medical profession is trying to find an effective "cure" to some GI ailments, but the reality that must be understood that there is NO
SILVER BULLET! If we GI sufferers allow our discomfort to devolve into serious EMOTIONAL issues, then it hurts oneself and the cause to find solutions. Individually we must, as I am doing, evaluate my eating/drinking/ social actions. I gave up smoking 40 years ago, (I miss smoking cigars), never drank much, and still do moderate exercise. Unfortunately, there are some in the HEALTH field that are offering help with GI problems, but windup just selling products for profit, and are useless. Our grocery stores stock natural products ( prunejuice, jarred prunes,Watermelon, pineapple juice,herbal teas, (chamomille, senna) probiotics, prebiotic, fresh fruits vegetables, Aloe Vera, Kefir, and more that I am trying to some success. But all in moderation.
Don't waste money on HEALTH GURU'S, ....the cures will come someday. Meanwhile, look at YOURSELF, I am trying to stay with following what In NEED, as opposed to what I WANT. I am eliminating much of my WANTS.Lets give thanks to MAYO Clinic for allowing this public exchange on the GI issue....many Dr's don't approve of this, they accuse us of playing DR. Yet, seems like they don't have any better solutions that we, individually, may be working with. I am cautious about finding powerful relief from some "hard" medications, that only bring on other, more hurtful, side effects. Stay the course fellow GI sufferers. From a young 87 year old "dude"

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No, I am not "signing in" I already have enough PASSWORDS! BYE, BYE. GENNARO

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@genise22

Thank you I appreciate your responses. I will look into the items you mentioned.

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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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I don’t know if the FODMAP diet is gluten free, but many people have gluten sensitivity without actual celiac disease. Celiac testing will be negative but a gluten free diet will help prevent the symptoms if you’re sensitive to it. It might be worth a try for a month if you haven’t already done that. That should be enough time to tell you how it is working. I hope you get some answers and relief!

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