Anyone else here diagnosed with Collagenous Gastritis??
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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collagastritis84
- Little Blue Penguin
- Posts: 35
- Joined: Mon May 24, 2010 7:40 pm
Anyone else here diagnosed with Collagenous Gastritis??
Hi everyone, after years of GI problems(all lower GI until recently) i had an endoscopy done which found Collagenous Gastritis. Collagenous Gastritis is extremely rare it would be nice to know im not alone out here.. My Dr now thinks that my diarrhea i'v been having on and off for years maybe Collagenous Colitis. I'm having an colonoscopy done soon which should get to the bottom of this. I was always told it was just IBS but I had a feeling it was something more sinister hopefully I am wrong.
ibrown
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Welcome Ibrown, you are correct collagenous gastritis is quite rare. From what I have read it is fundamentally the same as collagenous collitis.
The same type of tissue makes up the alimentary canal (the digestive tract) from mouth to anus and the thickening of the collagen bands can affect any part of the tract. The name changes but the effects are basically the same.
What circumstances led to your diagnosis
Welcome to the site
--Joe
The same type of tissue makes up the alimentary canal (the digestive tract) from mouth to anus and the thickening of the collagen bands can affect any part of the tract. The name changes but the effects are basically the same.
What circumstances led to your diagnosis
Welcome to the site
--Joe
Joe
Hi, and welcome to our internet family. I'm not aware of anyone else here who has that diagnosis, but I truly believe that is simply because virtually none of us have had gastric biopsies done. I can think of several members who probably have collagenous gastritis, (based on their symptoms), but most of them never had any biopsy samples taken from their stomach, or their biopsy samples were never analyzed for collagen band thickening.
To add to what Joe mentioned, our research suggests that collagenous gastritis, and collagenous sprue, are probably just alternative forms of collagenous colitis. Was your small intestine biopsied, to rule our collagenous sprue? If you've had GI problems for years, I'm guessing that your GI doc will indeed find collagenous colitis, when he does the colonoscopy exam. If that happens, then diet changes can be utilized to clear up all those symptoms at the same time.
Again, welcome aboard, and please feel free to ask anything that comes to mind.
Tex (Wayne)
To add to what Joe mentioned, our research suggests that collagenous gastritis, and collagenous sprue, are probably just alternative forms of collagenous colitis. Was your small intestine biopsied, to rule our collagenous sprue? If you've had GI problems for years, I'm guessing that your GI doc will indeed find collagenous colitis, when he does the colonoscopy exam. If that happens, then diet changes can be utilized to clear up all those symptoms at the same time.
Again, welcome aboard, and please feel free to ask anything that comes to mind.
Tex (Wayne)
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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collagastritis84
- Little Blue Penguin
- Posts: 35
- Joined: Mon May 24, 2010 7:40 pm
Many, many members here have been diagnosed with IBS for years - until their GI docs finally got around to doing a colonoscopy with biopsy samples, and then the diagnoses suddenly changed to MC. 
Quite a few members also have GERD. And, several members have been diagnosed with Lyme disease, prior to the onset of their MC. In fact, Polly, (who is an MD), suspects that her MC was caused by the long, drawn-out antibiotic treatment for Lyme disease.
I initially suspected Lyme disease myself, when my symptoms started, but I now doubt that I had it, because all of the arthritis symptoms that I had early on, disappeared after I adopted the GF diet.
Best of luck with your appointments.
Tex
Quite a few members also have GERD. And, several members have been diagnosed with Lyme disease, prior to the onset of their MC. In fact, Polly, (who is an MD), suspects that her MC was caused by the long, drawn-out antibiotic treatment for Lyme disease.
I initially suspected Lyme disease myself, when my symptoms started, but I now doubt that I had it, because all of the arthritis symptoms that I had early on, disappeared after I adopted the GF diet.
Best of luck with your appointments.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
we're glad you found us. Hope everything goes well tomorrow.Welcome!!!
Let me tell you what happened to me today. I just met the most wonderful Doctor. He was standing in for my new GP (while on holiday), but is in fact a highly respected surgeon in Hong Kong, who is now semi-retired. He is Vietnamese/Thai/Chinese and got his medical training in Germany where he worked for many years. While I was getting my vitamin and mineral IV (which takes about an hour) we talked of many things including the nonsense that just because the MC Dx name denotes "colon" it would preclude inflammation also being in the small intestines and other parts of the GI tract. In fact he said that the likelihood of it being in other parts of the GI tracked, even if not tested there, was quite high. When I said that blood tests did not show Celiac, he said "Silly.... no need for blood tests to prove it when other symptoms like malabsorption, low vitamin levels and existing MC Dx pointed to it. It was just common sense".
Some faith was restored in human nature today.
Best, Ant
Let me tell you what happened to me today. I just met the most wonderful Doctor. He was standing in for my new GP (while on holiday), but is in fact a highly respected surgeon in Hong Kong, who is now semi-retired. He is Vietnamese/Thai/Chinese and got his medical training in Germany where he worked for many years. While I was getting my vitamin and mineral IV (which takes about an hour) we talked of many things including the nonsense that just because the MC Dx name denotes "colon" it would preclude inflammation also being in the small intestines and other parts of the GI tract. In fact he said that the likelihood of it being in other parts of the GI tracked, even if not tested there, was quite high. When I said that blood tests did not show Celiac, he said "Silly.... no need for blood tests to prove it when other symptoms like malabsorption, low vitamin levels and existing MC Dx pointed to it. It was just common sense".
Some faith was restored in human nature today.
Best, Ant
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collagastritis84
- Little Blue Penguin
- Posts: 35
- Joined: Mon May 24, 2010 7:40 pm
Yes, if you can get the pathology report for the small intestinal biopsies, it might contain some very interesting information. I have always found that when I requested copies of such reports, I have always discovered many things that surprised me - things that my doctors never bothered to mention.
Tex
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Olivia-Micro-Colitis
- Adélie Penguin
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- Location: Fallbrook, Ca
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crystal552000
- Little Blue Penguin
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- Joined: Sat May 08, 2010 8:14 am
- Location: kansas city Mo
just diagnosed with gastritis also
I have been diagnosed with collagenous colitis for 6 years now, have been on every diet, and taken every med you can possible think of with no relief. besides the D I also always had nauseau everyday and a burning feeling right below my sternum, gi docs finally did an upper egd and i find out that I have gastritis, I am now awaiting biopsy results from the stomach as well as from the duodenum, spelling may be off, It would not surprise me however if the biopsy comes back with collagenous gastritis, may explain the years of entocort at 9mg and no results. prednisone however does help somewhat. I havent had a normal stool in 6 years but by better i mean 5 stools not 30