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smac0719

Stomach Tissue Bleeding

7 posts in this topic

I saw my gastro today for the results of an EGD. He mentioned the pathology of my biopsies showed bleeding within the tissue sample. I reminded him that I'd already been diagnosed with GAVE, which involves the lining, but he acted as though this was different and asked if I'd ever been diagnosed with evasculitis? I looked this word up and all I found was info on vasculitis. He is not doing any further diagnostic studies, but wants to see me back in 2 months. I got copies of the reports and am going to forward them to my rheumatologist to see what he says as I dont understand what I was told. :blink: Has anyone experienced stomach tissue bleeding that has been diagnosed differently than GAVE?


I may have Scleroderma, but Scleroderma doesn't have me!

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Well, Smac, this is all new to me. Is this the same gastro doctor that diagnosed you with G.A.V.E. (watermelon stomach)?


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Shelley. The crazy thing about the GAVE diagnosis is the gastro who performed that EGD didn't say anything at all about the GAVE (watermelon stomach) when I had my follow up. It was my sclero specialist who told me I had it when he reviewed the EGD report with me. I changed gastro's at that time because I felt it was evident gastro #1 didn't know anything about GAVE or he would have mentioned it.

 

I just had my 6wk blood work done this morning and it hit me that trace levels of blood have been showing up in my urine for a while now. My primary did an ultrasound of my kidneys a couple of months ago after blood showed up for the 3rd time, but the ultrasound was negative. Wonder if it could be coming from my stomach?

It was time for another UA today so I'll know what that shows in a few days.

 

I hope this is nothing new and is just a part of the GAVE. I've not had to have any treatment for the GAVE as of yet. For those of you with GAVE, how is it determined that you need treatment? Do you show outward signs of bleeding (like blood in urine or stool) or is it determined through bloodwork?


I may have Scleroderma, but Scleroderma doesn't have me!

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Hi,

 

I have GAVE. The way I found out was that I was very sick with restless legs, pounding headache, and I went to primary care physician for help. My hemoglobin was 6.1 so I had to be hospitalized and transfused. The GI that did my scope diagnosis me with GAVE. He didn't do argon plasma coagulation at that time because the lesions weren't actively bleeding. In retrospect I should have gone to get help sooner because I had black stools for about 6 weeks.

 

My second bleed I didn't have any black stools. I just had my legs hurting. My hemoglobin came by 7.4. I was hospitalized and transfused and I had to have treatment this time because my lesions were actively bleeding. I went back 6 weeks later and had another treatment. That took care of it. At this point I have bloodwork done every 2-3 months. I also know now that black stools are a sign of it , as well as restless legs. I hope this helps some. I don't know about the bleeding in the tissue sample.

 

Good Luck!

 

Nan

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Nan,

 

Thank you for the post. I do suffer from what I think is restless leg from time to time. The symptoms I have though are not what I see listed, the creeping and crawling sensation. My legs feel like they are tired and they have a strange ache like I have been using them too long. It's very uncomfortable and I notice it more when I am lying down although recent I have experienced the discomfort during the day as well. I wonder why that can go along with the bleeding?


I may have Scleroderma, but Scleroderma doesn't have me!

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My doctor told me that it is the lack of iron in your blood that causes the restless legs. I think it might be a good idea to see if your doctor thinks you should test your blood to check on hemoglobin level. I am not a doctor, but maybe you could tell him your symptoms and see what he thinks.

 

Nan

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I got my lab results back and everything is fine except my fasting glucose (slightly elevated at 103). My hemoglobin is within normal range at 12.9. I have blood work done every 6 weeks to make sure my liver is functioning well on the MTX so this will be one more thing to add to the list. I still haven't heard from my sclero specialist yet, but I guess I won't worry too much for now. Thanks again Nan for your input.


I may have Scleroderma, but Scleroderma doesn't have me!

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