1. < Digestive Health

Collagenous Gastritis

Posted by e @epvb, Mar 27, 2017

I was recently diagnosed with collagenous gastritis which is very rare. I'm looking for anyone else who has similar diagnosis.

Interested in more discussions like this? Go to the Digestive Health Support Group.

jng123 | @jng123 | Feb 7, 2018
In reply to @kanaazpereira "Hi @jng123, Unfortunately we aren't able to give a physician's contact information on Connect, but in..." + (show)
@kanaazpereira

Hi @jng123,

Unfortunately we aren't able to give a physician's contact information on Connect, but in the meantime, I sincerely encourage you to share your concerns with the Connect community; perhaps fellow members can help answer some questions? A few have consulted or will be consulting with Dr. Murray, and I'm confident they would be happy to share their insights.
May I ask, what concerns you the most @jng123?

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As you know how frustrating this disease is trying to find a cause and treatment... I have appointments to see a hemocrat doctor, vascular doctor ontop of already seeing gastro & endocrin doctors. I just wish there was a way to know I am not wasting my time visiting these doctors & introducing the disease to them to in the end receive blank stares and no successful help. I would love to be able to get to see Dr Murray to maybe even get on the right tract for this disease if there even is one... I just feel like I am in the dark.

Symptoms: nausea, stomach aching/ sometimes severe pain & cramping & hard bloating, acid reflux, food sensitivity to really any food depending on the day, extremly swollen ankles/feet/lower legs (occurs randomly), anemia, iron deficiency, low protein (in blood).

Thank you for reading,

REPLY
kellye5 | @kellye5 | Feb 7, 2018
In reply to @kanaazpereira "Hi @jng123, Unfortunately we aren't able to give a physician's contact information on Connect, but in..." + (show)
@kanaazpereira

Hi @jng123,

Unfortunately we aren't able to give a physician's contact information on Connect, but in the meantime, I sincerely encourage you to share your concerns with the Connect community; perhaps fellow members can help answer some questions? A few have consulted or will be consulting with Dr. Murray, and I'm confident they would be happy to share their insights.
May I ask, what concerns you the most @jng123?

Jump to this post

@jng123 I am so sorry you have to go through all of that. Here, no one could recommend any one. Mayo was our best bet and only referral from our own Medical University. My son has most of the same symptoms as you are describing with chest, back pain, nausea, indigestion, bloating and food issues being prominent. Some arm pain and always cold. We are grateful to have been able to get into see Dr. Murray and his team. Call the number under digestive diseases....Good luck.

REPLY
jjdenaro | @jjdenaro | Feb 7, 2018
In reply to @kanaazpereira "Hi @jng123, Unfortunately we aren't able to give a physician's contact information on Connect, but in..." + (show)
@kanaazpereira

Hi @jng123,

Unfortunately we aren't able to give a physician's contact information on Connect, but in the meantime, I sincerely encourage you to share your concerns with the Connect community; perhaps fellow members can help answer some questions? A few have consulted or will be consulting with Dr. Murray, and I'm confident they would be happy to share their insights.
May I ask, what concerns you the most @jng123?

Jump to this post

This is exactly how I feel.Daily caring for my daughter symptoms. 
Jocelynne is turning 13 on friday
Anemia. Low Iron. Low protein
Never complains of stomach pain but at one point was blood transfusion dependent due to anemia and bone marrow issues
Joce is currently taking Promacta for platelets And since October 17th.  When she was diagnosed by her gastro dr.  Dr Sahn here in NEw York. Jocelynne takes omeprazole 40mg 1 capsule twice dailyAnd takes novaferrum125 liquid iron 5ml daily
Jocelynne is followed by her Hemotologist. And Gastrologist
And weekly visits to her Holistic Dr.
Friday is an amazing dayHappy Birthday to my fearless Jocelynne
Please all keep posting
And please send contact information. For Dr Murphy.  As well as share how your success is with the visit
Very good approach
Jamilynne Denaro

REPLY
jjdenaro | @jjdenaro | Feb 7, 2018
In reply to @kanaazpereira "Hi @jng123, Unfortunately we aren't able to give a physician's contact information on Connect, but in..." + (show)
@kanaazpereira

Hi @jng123,

Unfortunately we aren't able to give a physician's contact information on Connect, but in the meantime, I sincerely encourage you to share your concerns with the Connect community; perhaps fellow members can help answer some questions? A few have consulted or will be consulting with Dr. Murray, and I'm confident they would be happy to share their insights.
May I ask, what concerns you the most @jng123?

Jump to this post

What treatment did you receive from Dr Murray

REPLY
jng123 | @jng123 | Feb 7, 2018
In reply to @kanaazpereira "Hi @jng123, Unfortunately we aren't able to give a physician's contact information on Connect, but in..." + (show)
@kanaazpereira

Hi @jng123,

Unfortunately we aren't able to give a physician's contact information on Connect, but in the meantime, I sincerely encourage you to share your concerns with the Connect community; perhaps fellow members can help answer some questions? A few have consulted or will be consulting with Dr. Murray, and I'm confident they would be happy to share their insights.
May I ask, what concerns you the most @jng123?

Jump to this post

Thank you @kellye5 Would you recommend trying to find a way to see Dr. Murray??? Was the trip completely helpful?

REPLY
jng123 | @jng123 | Feb 7, 2018
In reply to @kanaazpereira "Hi @jng123, Unfortunately we aren't able to give a physician's contact information on Connect, but in..." + (show)
@kanaazpereira

Hi @jng123,

Unfortunately we aren't able to give a physician's contact information on Connect, but in the meantime, I sincerely encourage you to share your concerns with the Connect community; perhaps fellow members can help answer some questions? A few have consulted or will be consulting with Dr. Murray, and I'm confident they would be happy to share their insights.
May I ask, what concerns you the most @jng123?

Jump to this post

Hi Jamilynne, what is the holistic doctor doing for your daughter? I was considering getting into seeing one in the near future.

REPLY
ZeeGee | @fourof5zs | Feb 8, 2018
In reply to @kellye5 "Hey y'all. We are about 20 days out from our week or so stay at Mayo..." + (show)
@kellye5

Hey y'all. We are about 20 days out from our week or so stay at Mayo MN. I am so frustrated as I have called every week since getting accepted and an appointment to see if our records have gotten there and nothing until today...one set if records from our GI. I am now told the slides must be asked for from the pathologist...we had NO idea. Medical records is what we were told and they told us they would handle it. Where is the Mayo 101? I feel like an idiot and no the reason our docs here are not getting the records to Mayo is because they are losing a patient...they are delighted because NO ONE on the East Coast has heard of CG!! I felt like I was just a bother....and perhaps I was. Maybe I am supposed to know all of this....anything else I need to know? I have received nothing. No app. time or place. Is there a shuttle at Rochester International airport? I am just a mom from SC trying to get my kid help in MN...with No guidance. I have read maps and other's stories but I am anxious.

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@kellye5 I live in Albany GA. I went to the Mayo Clinic in Jacksonville FL. My hospital was suppose to send a cd of a scan to the Mayo. Oh big surprise two weeks later we found out they did not. So we went to hospital records and personally got a copy burned and also got printouts of other results the Mayo wanted. We overnight FedEx them to the Mayo and my husband actually requested a signature to make sure the package was received. We learned not to rely on our hospital for such things. The Mayo Clinic has been very good about contacting my local gastroenterologist for additional information and sending him my test results. They are working together to help me be healthier. Our local hospital is far from the best.

REPLY
looloo | @looloo | Feb 8, 2018

Hi, Here is my story. My daughter now 12 was diagnosed in October 2017. A year after a emergency blood transfusion in Dec 2016. She is on 120mgomeprazole & iron since then. She is now gluten free and we find that helps. She has low bone density. History of family auto -immune alapecia, hasimotos. I was ill during pregnancy and she was admitted to hospital with cellulitis age 6 (suggested link to strep and strong antibiotics) and again with influenza A 5 years ago, a series of injuries, knee, ankle, neck, finger, hand. Lives with pain very well, is an inspiration. I just wish we knew more and there was an alternative to omeprazole with Osteoporosis risk. what is the cause and how can we help. lost for step to take to help her and the unknown of her future health worries us both. I am reading all posts and compiling info, on symptoms, medicine (live in Australia - originally Scottish - unsure if medication and treatment available in US also on offer here) and any links. Has anyone else done similar how can we share and learn in a better organised way than one bug long chat stream. Keen to support, learn and share. Sending happy thoughts. We were relieved it wasn't chrons and had prepared ourselves for this worst, so happy i have a 12 year old started high school, outwardly happy and healthy.

REPLY
13 replies
Mindi | @mindi | Feb 8, 2018
In reply to @looloo "Hi, Here is my story. My daughter now 12 was diagnosed in October 2017. A year..." + (show)
@looloo

Hi, Here is my story. My daughter now 12 was diagnosed in October 2017. A year after a emergency blood transfusion in Dec 2016. She is on 120mgomeprazole & iron since then. She is now gluten free and we find that helps. She has low bone density. History of family auto -immune alapecia, hasimotos. I was ill during pregnancy and she was admitted to hospital with cellulitis age 6 (suggested link to strep and strong antibiotics) and again with influenza A 5 years ago, a series of injuries, knee, ankle, neck, finger, hand. Lives with pain very well, is an inspiration. I just wish we knew more and there was an alternative to omeprazole with Osteoporosis risk. what is the cause and how can we help. lost for step to take to help her and the unknown of her future health worries us both. I am reading all posts and compiling info, on symptoms, medicine (live in Australia - originally Scottish - unsure if medication and treatment available in US also on offer here) and any links. Has anyone else done similar how can we share and learn in a better organised way than one bug long chat stream. Keen to support, learn and share. Sending happy thoughts. We were relieved it wasn't chrons and had prepared ourselves for this worst, so happy i have a 12 year old started high school, outwardly happy and healthy.

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Sorry to hear about your daughter looloo. You mention an emergency blood transfusion Dec 2016. Was that to treat sudden acute large stomach bleed at that time or was it was more chronic slow bleeding from stomach wall?

REPLY
looloo | @looloo | Feb 8, 2018
In reply to @looloo "Hi, Here is my story. My daughter now 12 was diagnosed in October 2017. A year..." + (show)
@looloo

Hi, Here is my story. My daughter now 12 was diagnosed in October 2017. A year after a emergency blood transfusion in Dec 2016. She is on 120mgomeprazole & iron since then. She is now gluten free and we find that helps. She has low bone density. History of family auto -immune alapecia, hasimotos. I was ill during pregnancy and she was admitted to hospital with cellulitis age 6 (suggested link to strep and strong antibiotics) and again with influenza A 5 years ago, a series of injuries, knee, ankle, neck, finger, hand. Lives with pain very well, is an inspiration. I just wish we knew more and there was an alternative to omeprazole with Osteoporosis risk. what is the cause and how can we help. lost for step to take to help her and the unknown of her future health worries us both. I am reading all posts and compiling info, on symptoms, medicine (live in Australia - originally Scottish - unsure if medication and treatment available in US also on offer here) and any links. Has anyone else done similar how can we share and learn in a better organised way than one bug long chat stream. Keen to support, learn and share. Sending happy thoughts. We were relieved it wasn't chrons and had prepared ourselves for this worst, so happy i have a 12 year old started high school, outwardly happy and healthy.

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No visable bleeding so slow bleed. She has had no visible, is this possible to experience big visible blood loss? Any signs to watch out for? Anyone wlae has bone density issues?

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