Help needed not being taken seriously

Posted by szelisk @szelisk, May 21 8:32am

For the past 4 years, my GI system has been getting worse. I have Celiac and Microscopic Colitis, both confirmed by biopsy. Even though all the blood test show I have not been having gluten. My last colonoscopy showed a round lession (looks like a rug burn). Taking the prep I felt like I poured alcohol on an open wound. I would like to visit Mayo, unfortunately, many MD's don't believe how bad it is. When you are afraid to eat or drink water because you will have explosive diarrhea. Below is the lession no one can identify.

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@kbr99

I had an endoscopy with the biopsy. I drink a lot of water but just filtered water. I never thought about electrolytes. Thanks so much for the tip. It’s so debilitating. I don’t know how you’ve managed for 3 years. I’m lucky t work from home 3 days a week. The 2 days are rough!

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It is tough, but it took over 30 years to get the Celiac diagnosis. So in a way, it's sad to say I'm used to GI issues. Although, I had chronic constipation prior to getting diagnosed with Celiac. They finally got it when it switched. The electrolytes will help you feel a little better.

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@szelisk

It is tough, but it took over 30 years to get the Celiac diagnosis. So in a way, it's sad to say I'm used to GI issues. Although, I had chronic constipation prior to getting diagnosed with Celiac. They finally got it when it switched. The electrolytes will help you feel a little better.

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Thank you

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@msmelnik

I had to ask a doctor what he would do for his wife or daughter? He thought about it for a minute and then ordered the test I needed. Bigger institutions are better too. They, like Mayo, have so many more resources. In Seattle I go to the University of Washington Medical Center. They have their own hospitals and labs. I'm getting top notch care and providers that take things seriously and really listen. Good luck 🤞

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You are smart to ask "that" question. I did it once, in the ER, for some unknown reason my calcium had dropped to 7.5, I used to normally have middle-upper levels, now I have elevated calcium, hence my Hyperparathyroidism diagnosis and surgery in 2 weeks. I asked the ER dr., just like you did, he said put her in the hospital, so I did to get calcium IV. BUT, he never told me why it was low and I didn't ask, I'm usually not a stupid patient but I was then. I hope everyone read's your your suggestion, it is an invaluable tool we, as, patients, MUST USE MORE OFTEN.

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@kbr99

I feel so frustrated. I never went to the doctor until I had COVID twice. I had 3 shots and still got it. The 2nd bout was the worst. Since then. I’ve been diagnosed with micro vascular heat disease and an undiagnosed GI condition. For the past year I’ve been dealing with constant diarrhea and bloating. I’m negative for Celiac and IBS. All of the other tests came back negative so the dr basically gave up. I’ve lost 28 pounds without trying. Have no appetite or energy and no one seems to care. It’s extremely frustrating. I’m at my wits end. Any suggestions?

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You’re right , getting all the tests and diagnoses over and over . Still being severely sick 🤢 with extremely bad symptoms that ruin your life daily . Keep you from any Joy . Can’t eat out or even go out much to a store or have family over . I’m 11 years into this mess .
Don’t everything , tried everything. Even tested at Mayo Jax 3 big tests .
No Dr can help . On 5 th Gastro.
Today 7 trips to bathroom before noon . Harsh pain on lower left side ( I have Diverticulosis that I’m thinking is turning into Diverticulitis bouts ). Deep 1000’s wet belching and churning. Chronic fatigue in day .
I feel for you as I know exactly how frustrating this is . 🙏😓.

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@rozy288

You’re right , getting all the tests and diagnoses over and over . Still being severely sick 🤢 with extremely bad symptoms that ruin your life daily . Keep you from any Joy . Can’t eat out or even go out much to a store or have family over . I’m 11 years into this mess .
Don’t everything , tried everything. Even tested at Mayo Jax 3 big tests .
No Dr can help . On 5 th Gastro.
Today 7 trips to bathroom before noon . Harsh pain on lower left side ( I have Diverticulosis that I’m thinking is turning into Diverticulitis bouts ). Deep 1000’s wet belching and churning. Chronic fatigue in day .
I feel for you as I know exactly how frustrating this is . 🙏😓.

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I so far haven't had COVID, I have a billion other health problems but not that. But my buddy from high school got really sick after each shot, over 3 years he had COVID, actually tested positive 7 times. His pains were just like fibromyalgia, me/CFS, thyroid issues, chronic inflammation, chronic pain, cognitive impairment, etc. I would never have said this to him, but it may, hopefully, be research aimed at COVID, will get answers for all of us non- COVID, but have all of the symptoms above, that we have all been fighting and failing to get any answers, any dr to believe us. I am so sorry for all of the COVID sufferer's, my heart goes out to you. I would love to send you some energy too, but I'm plum out of any energy of any kind.

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@rozy288

You’re right , getting all the tests and diagnoses over and over . Still being severely sick 🤢 with extremely bad symptoms that ruin your life daily . Keep you from any Joy . Can’t eat out or even go out much to a store or have family over . I’m 11 years into this mess .
Don’t everything , tried everything. Even tested at Mayo Jax 3 big tests .
No Dr can help . On 5 th Gastro.
Today 7 trips to bathroom before noon . Harsh pain on lower left side ( I have Diverticulosis that I’m thinking is turning into Diverticulitis bouts ). Deep 1000’s wet belching and churning. Chronic fatigue in day .
I feel for you as I know exactly how frustrating this is . 🙏😓.

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I’m so sorry try hear you have been dealing with this for so long. Mine comes and goes as well. I can actually have a couple of good days and then whammo it’s back again. I’ve tried food elimination and that didn’t change anything. For the life of me I can’t figure out what makes it stop for a couple days and then stay with a vengeance for weeks. I did buy electrolytes so I’m hoping that helps.

Take care of yourself and thank you for sharing.

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@shelleyw

I so far haven't had COVID, I have a billion other health problems but not that. But my buddy from high school got really sick after each shot, over 3 years he had COVID, actually tested positive 7 times. His pains were just like fibromyalgia, me/CFS, thyroid issues, chronic inflammation, chronic pain, cognitive impairment, etc. I would never have said this to him, but it may, hopefully, be research aimed at COVID, will get answers for all of us non- COVID, but have all of the symptoms above, that we have all been fighting and failing to get any answers, any dr to believe us. I am so sorry for all of the COVID sufferer's, my heart goes out to you. I would love to send you some energy too, but I'm plum out of any energy of any kind.

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Thank you for sharing. I hope if one good thing comes out of COVID it is a cure or better understanding of how to treat some of these chronic illnesses that seem to be largely ignored. It also seems strange to me that so many younger people I know are dying of sudden heart attacks. I’d be curious if it were related to COVIDor the vaccine in any way. I know have heart disease I never had before.

Thank you for sharing. Take care.

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@kbr99

Thank you for sharing. I hope if one good thing comes out of COVID it is a cure or better understanding of how to treat some of these chronic illnesses that seem to be largely ignored. It also seems strange to me that so many younger people I know are dying of sudden heart attacks. I’d be curious if it were related to COVIDor the vaccine in any way. I know have heart disease I never had before.

Thank you for sharing. Take care.

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Great point. Multiple studies have been released (although not widely reported on) myocarditis and heart/cancer issues related to the vaccine. I believe Aztrazentica actually issued a statement and pulled their drug from EU. Some of these studies are hard to find, but if you search NIH directly or use a browser such as search.brave.com you will find many unreported studies. Also, Dr. John Campbell (on youtube) actually goes over these studies and leads you in a great direction.

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@szelisk

Great point. Multiple studies have been released (although not widely reported on) myocarditis and heart/cancer issues related to the vaccine. I believe Aztrazentica actually issued a statement and pulled their drug from EU. Some of these studies are hard to find, but if you search NIH directly or use a browser such as search.brave.com you will find many unreported studies. Also, Dr. John Campbell (on youtube) actually goes over these studies and leads you in a great direction.

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Thank you so much for this information. I will definitely check it out.

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