MDJunction - People Helping People
 
Ask a Question
05/15/2012 02:24 PM

atrophic gastritis

floridian
floridian  
Posts: 2032
Senior Member

Hi, my name is Rachel and I just found out not too long ago that I have atrophic gastritis[the auto-immune version]. The dr. said my stomach looked abnormal and obtained biopsies but tests really didn't show anything. He said he didn't know what to do for me or what it meant? I really don't know what to expect long term and it has me quite worried. From what I've read it can lead to a number of things, none of which I want. Does anyone know how to respond to this? I am 60 years of age.
Reply

05/17/2012 02:30 PM
Duck4wave
Duck4wave  
Posts: 173
Member

Wink Tongue Hi there, floridian...I think we're in the same boat (lol)...check out my profile and some diary pages...joy, huh? Don't have much time to write more here but will try and keep up with you..hang in there! LoisCheerful More later, Rachel ~ ciao!

05/17/2012 02:55 PM
floridian
floridian  
Posts: 2032
Senior Member

Hi Duck4wave, Thanks so much for responding. I was beginning to think I was the only one. Do you know how common this is? I have been having problems with my back and also numbness in my leg. I used to exercise but had problems with knee locking up on treadmill. Does your Dr. have you on anything? Where in Texas do you live? We're visiting family in San Antonio in June and will be spending several days in Waco too. Do you know of anyone in your family who had this condition since it's hereditary? The dr. who did my upper scope said my stomach appeared very old looking and shriveled up. I'm a little worried [okay,alot]. I also have thyroid and vitiligo[both auto-immune diseases]. The vitiligo I just got about 3 years ago and have almost lost all my coloring! I am awaiting additional blood tests to see if I have any b-12 deficency. Thanks again for responding.

05/18/2012 06:01 PM
Duck4wave
Duck4wave  
Posts: 173
Member

Smile Hello floridian.

I don't know how common this is. I tested negative for H-Pylori. My GI doc thinks my gastritis is possibly autoimmune-based since I already have alopecia and autoimmune conditions can present in clusters (with other ailments). Yes,the development of gastric cancer is possible for us along with a form of lymphoma. I find it unsettling that there is no protocol set for AMAG (autoimmune metaplastic atrophic gastritis)exams and watching that it doesn't progress any further than where it is. I don't take medication for it. My diet is the same, no change there. My GI did say a possible check-up this year (2 yrs after dx)but I'm not going to pester her for it. Ermm I hope her office calls before the end of the year to set up a check...if not by Dec. 1 I may call her first! I've never heard of this being hereditary...none of my family-or-origin has had it. +sigh+

Hmm...gotta grab a bite of dinner...more later! Wink Hang in there and have a super Saturday! Cheerz! quak...........le duck


05/20/2012 02:33 PM
floridian
floridian  
Posts: 2032
Senior Member

Hi Duck! By check-up, do you mean another upper scope? My dr. told me to come back in 3 years!!!! He said it was a slow growing cancer and with no family history of stomach cancer I shouldn't worry too much. My dad had pancreatic cancer and ulcers but lived to be 86, although he was on oxygen. My b-12 levels were okay but he said they should be checked again in 6 months. He referred me back to family practice. I go to the naval hospital here in Pensacola which is within walking distance of where I live. I feel a little uneasy about everything since the doctor said he really didn't know why my stomach looked the way it did, as if there must be a reason. I haven't been able to exercise and have gained about 30 pounds. I have gone from a 12 to a size 16 in a matter of months. The clothes I bought several months ago, I have already grown out of. I quess there's no particular diet or regimen to follow. I just feel I am way to young to start having health problems!!!!! Thanks for being a sympathetic ear. I hope you had a nice weekend with family. How did you end up in Texas?

05/21/2012 07:42 AM
Duck4wave
Duck4wave  
Posts: 173
Member

OMG! Cool W00t

You live in walking distance of the Pensacola naval base?

I'm WAY jealous now!

I'll have to pm you how I got here in Lone Star country...it'll be another book....sorry 'bout that!Grin

I agree.......we're way too young for this stomach crap ~ like I said I'd never have known a thing if it wasn't for my low blood labs. I have ZERO symptoms of gastritis and I eat pretty healthy since I live with 3 vegetarians. Like you I exercise, and I'm floating good 'karma' to you so you'll be inspired to tackle your exercise more diligently.....hey, I'm 55 and there's days I'd rather not walk/jog the 4 mile route but if I get it done and tie those laces I"m feeling good after I get home.

Hang in there.......keep those small(er) clothes.........you WILL get back into them........one way to help out is WRITE down everything you eat and at the end of the day see how balanced (or not) your intake is and what you need to do next time. I do it sometimes in my head to keep me on the straight and narrow (emphasis on narrow!) More later...I gotta make a hospital visit with my hubby...........cheerz, floridian............and don't forget the sunblock! Sideways Cheerful


12/16/2012 02:36 AM
drenpop3
drenpop3  
Posts: 2
New Member

Hi Floridian! I think I can help you out. About 4 years ago I was diagnosed with Atrophic Gastritis, but with a specific type-- Autoimmune Metaplastic Atrophic Gastrtis. As it says in the name, this disease makes me immuno-compromised, as well. I have Type 2 of this disease, the hereditary version. You said you are 60 years old, so I was wondering if you've always had symptoms, or if you have Type 1 of the disease, Acquired Atrophic Gastritis? From what you report, your age & your health info, your case isn't as bad as mine,& that's a good thing. We share some symptoms, having the same disease, but mine go much farther, since I have Type 2. I hope I can be of help & give you all the support you need. There's a high chance your experience can be treated, maybe even cured, but definitely kept under control Smile

I'm going to tell you honestly what I've been thru w/ this disease, b/c there's little known about it, & what I've experienced may help both you & others. I'm only 24, & I've been battling this debilitating disease since I was 12. I was misdiagnosed w/ severe Crohn's disease for 6 years until my father, a doctor, found an anomaly in my blood work one day. As it turns out he saved my life.

Everyone w/ our disease progresses @ different paces. My illness is moving thru stages rapidly. I have multiple injections I or my caretaker have to give myself everyday to stay alive-- one of which are B12 shots. B12 isn't just for energy and weight loss. W/ A.M.A.G (Autoimmune Metaplastic Atrophic Gastritis), I don't absorb many types of vitamins & nutrients thru my food like any1 else b/c w/ this disease my entire digestive system is falling apart, becoming infected &, in some areas, dissolving. If you can't absorb B12, like me, it eventually causes your nervous system to begin to fail, starting w/ numbness in the extremities, eyesight failing, & eventually involuntary systems failing. But I take my injections every day, & have my blood drawn every week to two weeks to check my immune system AND my folate levels-- which are basically counts of B12 & other nutrients. I've had organs fail, major surgeries, & the pain is constant but you get used 2 most of it. It's the really bad days when the pain is extreme that you can blackout @ any time. From what I read in your post, you probably have Type 1, the Acquired version, & that is treatable & usually curable, and DEFINITELY not as severe as my Type 2, but we do share many symptoms, like the numbness in legs & arms, the gut pain, & being immuno-compromised. You're very lucky you have a doc that knew to look at your lab work & biopsies for signs of this disease. It sounds like your doc is 1 of the really good ones, & there aren't many specialists for this disease, so I'm happy you have a smart doctor! Smile If you have any questions, I'm a member of this site. I'll be happy to help any way I can. More people need to know about this disease, including doctors! I wish I'd had someone to help me all those years I didn't know what was wrong & why my body was failing. You probably have Type 1, & that has a good prognosis, Rachel! That can be treated & possibly reversed, although the immune problems will probably always be there, but that's treatable, as well. I didn't type this to bother you, I just wanted you to know that I know what you're going through...& then some...& I'll be happy to give you lists of reference materials & help you through anything I can help you with.

I'm sorry you're sick, but I'm glad your diagnosis isn't as serious w/ this disease as mine Smile Anything you need, I'm here! Smile Smile Smile Smile Smile


12/17/2012 04:00 PM
floridian
floridian  
Posts: 2032
Senior Member

Hi Drenpop, so happy to hear from someone else with this disease. I also have the hereditary type. I had my blood levels checked 6 months ago so it's time to go in again. I'm waiting until after Christmas. I'm so sorry for you getting it at such a young age and struggling with it so. I may have had syptoms all along and just ignored them. Sooner or later I will also probably be taking the b-12 shots. Am surprised to hear you must take them every day. Wow! You mentioned a caretaker. Are you unable to care for yourself? I am also in the copd support group. I've never smoked but a spirometry test given last January showed I had a mild obstructive disease. I was sick last Christmas. I was put on medication for gerd for a cough that didn't go away. Since I kept getting sicker[wheezing and sob] that led to the spirometry test. I stayed on the medication and decided to get a colonoscopy which led to them including an upper scope to see if I needed to stay on the medication. That led to the diagnosis of atrophic gasritis. What organs have been affected? I so want to hear more from you. Please feel free to post again.

12/18/2012 09:10 PM
drenpop3
drenpop3  
Posts: 2
New Member

Hi Floridian!

On the caretaker issue, I'm usually good to care for myself but as my disease has progressed, especially the last two years, there are times when the pain &/or other symptoms keeps me bedridden. Also, some of the injectable medications I have to take are tricky b/c where they are usually introduced into the muscle happen to be near nerves or areas that are hard to see & therefore reach. Also, b/c of my advanced stage of the disease, my body can no longer regulate temperature as it should. I overheat far too often, although the B12 injections help my body regulate its' temp a bit more normally. So a few times a week, when the trickier meds have to be administered, I have a private nurse that stops by to help. &, if I'm bedridden from the disease, the nurse stays to help me. But I'm a successful writer & make my own good money, so the disease doesn't affect my work schedule or the fact that I can work. Right now I don't need a person to constantly help me. But my docs and I are in agreement that as the disease progresses I should make arrangements to have a live-in, constant caregiver. I don't like thinking about that or discussing it, tho, b/c I don't want to live like that & it's not pleasant to think about.

My road through this gastroenterology-related adventure (lol) started w/ excessive, non-stop coughing, as well. They thought I had childhood asthma, @ first, but a bronchoscopy revealed that my bronchial tubes were white & eaten away at from gastric acid. I was given a 24-hour pH level test @ the hospital, & the docs found that my stomach acid was dangerously acidic, far more so than stomach acid should be. That led to the gastroenterologist a stepping in & years of testing & incorrect diagnoses. Now my docs believe that if the other docs had correctly diagnosed me sooner, my disease would not have progressed as quickly b/c I would have begun getting treatment sooner & at a younger age.

The 1st organ I had problems w/ was my gall bladder. No big deal, you can live w/out it. But my immune system's so bad that any surgery comes w/ major complications & much more recovery time needed than normal. I've had to have many exploratory surgeries, 3 parts of my intestines removed, a surgery to place a tube draining some of the super strong stomach acid & bile to a portion of the intestines lower down in my intestines, & one kidney removed due to failure. All thanks to this disease. At the moment I'm approaching my next scheduled surgery to repair extensive damage in particular areas of my esophagus & upper stomach lining. All of those who suffer from this disease have different experiences & progress through this disease at different speeds.

I hope that helped! I also messaged you backSmile sorry for any typos. I need a keyboard for my tablet, lol!

-- drenpop3

Post edited by: drenpop3, at: 12/18/2012 09:17 PM


12/20/2012 09:11 AM
floridian
floridian  
Posts: 2032
Senior Member

So sorry you've been through all that! I can't even imagine what that must be like at your age, having had to get through school and all. Good thing you are an author and therefore work at home. I'm so glad you have had the support of your father through all this. Are there any siblings and if so, are they healthy? It's supposed to be hereditary. Is there no one else in the family with it? We need to stay in touch with each other. I definitely want to keep track of how you are doing. I'm hoping you are having one of your good days and wish you a Merry Christmas! Let's hope for a healthier New Year!
Reply

Share this discussion with your friends:
<< Start < Prev 1 Next > End >>


Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.
Contact Us | About Us
Copyright (c) 2006-2014 MDJunction.com All Rights Reserved