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Hopeful New Guy Here

aluft

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aluft Newbie
aluft
Posted

Hi all,

I just got out of the hospital yesterday after a colonoscopy mishap and the woman discharging me told me about this disease. She is 62, very Irish, and was just diagnosed 2 years ago with it and as i was talking to her, she just kinda looked at me like I was telling her story. I'm 52 and have had issues for too many years to even remember. After a lot of discussion and Q&A, she said i had classic symptoms.

My father spent years rubbing his stomach complaining of belly aches and how the doctors could never find anything wrong with him. I've had horrible visions over the last bunch of years remembering that because i've been doing the exact same thing. I've dreaded having to live a life of absolute misery.

My younger brother had a bowel resection because of diverticulitis when he was only 17.

Over the last 5 years I've been diagnosed with GERD, IBS, diverticulitis and Barrette's. My last 2 endoscopes have found polyps and I've been taking protonix twice a day to try to control the acid and thats not including all the chewable antiacids and alkaseltzer in between. Diarreha has become the norm for i couldn't tell you how many years.

I just had a colonoscopy and they found 2 polys and unfortunately, one of them was biopsied and 6 days later began to hemmorage. I just got out of a 6 day stay at the hospital after they spent 3 days trying to stop the bleeding.

However, none of these tests did a darn thing for the intensity of pain I've been experiencing over the last year in my abdomen. It's so bad now I can't eat and I just got back from my PCP with a script for hyoscyamin to alleviate some of the pain so I can eat.

I never heard of Celiac Disease until this woman told me about it yesterday and how since she's been on a gluten free diet for the last 2 years it's changed her life like night versus day.

I told my doctor about it and just went for the blood test for it today and I am also going to my GI doctor Wednesday and discuss a biopsy with him.

With polyps removed from my esophagas last year and getting the results of precancerious and major polyps in my colon today, I felt certain the intense pain in my guts was cancer eating me alive and I just broke down.

I have a glimmer of hope after talking to my doctor today that, according to him, most polyps are precancerious and I shouldn't jump to conclusions and give the Celiac tests a run for their money.

I think you all can understand my apprehension that after years of suffering, I surely thought I was doomed.

Thank God for the nurse that signed me out of the hospital and her encouragement. I feel like I have a chance. She printed out all this literature and information on Celiac and turned me on to this forum.

I'm sure noone wants any disease but if I have a choice between the lesser of evils, celiac or cancer....well...you know which way I want to go...and to imagine a life without all the reflux and burning and pain..

I'm not sure if this woman is active on this forum but if you are.."THANK YOU" for some hope.

Al

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Cinnamon Apprentice
Cinnamon
Posted

Oh my gosh, just try the diet. Don't even wait for the test results. Better health is waiting for you!!

happygirl Collaborator
happygirl
Posted

Just wanted to welcome you to the board! I certainly hope that you find some answers.

Don't go gluten free until you have completed any testing that may occur. Even if you receive negative results, some still try the diet and see improvement.

The blood tests for Celiac are:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Best of luck!

mftnchn Explorer
mftnchn
Posted

Since it sounds like you are able to get the tests right away, I disagree with the previous poster. Once you start the diet, you cannot do any tests for celiac.

But as soon as you finish the tests---yes! Start going gluten-free, as this could very well be the answer you are looking for.

This forum is a wonderful source of information to help you make the adjustment. I'd start reading here so that you'll be prepared to make the adjustment. It will take awhile so just give yourself some time and be patient.

Please keep us posted!

larry mac Enthusiast
larry mac
Posted

Hey Al,

You know it's never good when a post starts out with "I just got out of the hospital yesterday after a colonoscopy mishap"! :o

Seriously though, I hope it does turn out you have Celiac disease. When my doctor informed me of my diagnosis, he told me "of all the diseases I have to tell people they have, this one is the best. There's no operation or medicine needed. All you have to do is go on a gluten-free diet and you'll feel better."

And he was right!

So good luck. Don't go on the diet untill you are diagnosed.

best regards, lm

loco-ladi Contributor
loco-ladi
Posted

Since you had the blood test already if I recall correctly you now have to make a choice...

#1) wait for the results then wait for the biopsy to have a confirmed diagnosis

#2) wait for the results screw the biopsy and start the diet and see how it goes

I couldn't talk my doctor even into the test... all he wanted to do was shovel acid reflux pills into me.... which by the way didnt help. The gluten-free diet did.

You need to decide from what you have read and seen and felt and done if you need a doctor to tell you this is your problem or not.

No matter what while you wait learn as much as you can because this is your body and your health and nobody will pay as much attention to it as YOU will. It matters so pay attention and do your research you might be amazed what you learn along the way.

kenlove Rising Star
kenlove
Posted

I was 53 when they first figured it out in me. Blood tests were iffy and I kept having to talk the doc into doing more. Finally I demanded the other scope and sure enough, almost no vili left in the small intestine. Fast forward two years and I've seldom felt better. Stopped taking all the other medications too but just started to take some gluten free vitamins a few weeks ago which is a big energy burst. I've also had the colonoscopy and polups 6 years ago, given all the assorted meds and so on.

The only time i need tums or stonger is if I'm stupid and eat something spicey after 9 at night!

I also believe that being gluten free is good for you even if you dont have celiac. Someone on the forum a few weeks ago

told me that all the gluten a body needs is in 1/24 of a slice of bread. Try to get the tests and go gluten-free s soon as you can. You'll feel a world of difference in no time!

Ken

Hi all,

I just got out of the hospital yesterday after a colonoscopy mishap and the woman discharging me told me about this disease. She is 62, very Irish, and was just diagnosed 2 years ago with it and as i was talking to her, she just kinda looked at me like I was telling her story. I'm 52 and have had issues for too many years to even remember. After a lot of discussion and Q&A, she said i had classic symptoms.

My father spent years rubbing his stomach complaining of belly aches and how the doctors could never find anything wrong with him. I've had horrible visions over the last bunch of years remembering that because i've been doing the exact same thing. I've dreaded having to live a life of absolute misery.

My younger brother had a bowel resection because of diverticulitis when he was only 17.

Over the last 5 years I've been diagnosed with GERD, IBS, diverticulitis and Barrette's. My last 2 endoscopes have found polyps and I've been taking protonix twice a day to try to control the acid and thats not including all the chewable antiacids and alkaseltzer in between. Diarreha has become the norm for i couldn't tell you how many years.

I just had a colonoscopy and they found 2 polys and unfortunately, one of them was biopsied and 6 days later began to hemmorage. I just got out of a 6 day stay at the hospital after they spent 3 days trying to stop the bleeding.

However, none of these tests did a darn thing for the intensity of pain I've been experiencing over the last year in my abdomen. It's so bad now I can't eat and I just got back from my PCP with a script for hyoscyamin to alleviate some of the pain so I can eat.

I never heard of Celiac Disease until this woman told me about it yesterday and how since she's been on a gluten free diet for the last 2 years it's changed her life like night versus day.

I told my doctor about it and just went for the blood test for it today and I am also going to my GI doctor Wednesday and discuss a biopsy with him.

With polyps removed from my esophagas last year and getting the results of precancerious and major polyps in my colon today, I felt certain the intense pain in my guts was cancer eating me alive and I just broke down.

I have a glimmer of hope after talking to my doctor today that, according to him, most polyps are precancerious and I shouldn't jump to conclusions and give the Celiac tests a run for their money.

I think you all can understand my apprehension that after years of suffering, I surely thought I was doomed.

Thank God for the nurse that signed me out of the hospital and her encouragement. I feel like I have a chance. She printed out all this literature and information on Celiac and turned me on to this forum.

I'm sure noone wants any disease but if I have a choice between the lesser of evils, celiac or cancer....well...you know which way I want to go...and to imagine a life without all the reflux and burning and pain..

I'm not sure if this woman is active on this forum but if you are.."THANK YOU" for some hope.

Al

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      Colonoscopy with large area of inflammation

      By trents · Posted

      Because you have already had the "gold standard" test done, and because you have some experiential evidence that removing gluten from your diet causes you to feel better, it would make sense to begin the gluten-free diet as you wait for biopsy results.
    • growlinhard1
      Colonoscopy with large area of inflammation

      By growlinhard1 · Posted

      I wasn't given any blood tests. I think I should try the gluten free diet because when I cut it out a few weeks ago for just a couple of days, I know I started feeling better. The difference was actually pretty dramatic. When I learned gluyen free earing may cause false negative biopsy results, I went back to gluten full force and feel like you know what × 10. Do you feel it would be okay since the gold standard for diagnosis is behind me or should I wait for biopsy results? In your opinion, of course. I know you can't offer me medical advice.
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